James Whale Kidney Cancer Patient Day – Great!!

Well back home in Cornwall at last and catching after going up to Colchester to see my Dad straight from the James Whale Fund for Kidney Cancer Day in London on the 18th Nov.

What a great day – nearly 100 people !!!!! We were soooo pleased to see so many patients and carers and nurses from all over and some people travelled quite a way to be with us. But everyone said it was worth every ounce of effort and some of the comments from patients were very touching. One family who had travelled quite a way after a recent diagnosis said it had changed the way they were thinking about the disease and they felt they were not alone because they now had faces to put to names, had made friends and so they did’nt feel so alone anymore.

I just have to say the work and effort the James Whale Kidney Cancer Team put into the day was nothing short of amazing. It was a great venue; so near the underground tube station and the facilities at the Science Museum were first rate. Lunch was lovely, even allowing for my silly teeth following work in the dentist chair a few days previously, I thought the catering and the choice offered was superb, I know there were so many of us that we had to form an orderly queue for lunch but even that was useful because it gave us a chance to talk to other patients who we may not have met. I noticed a bit of nudging to get to the cakes in the afternoon and I have an endearing memory of Mr Turkentine, the Chief Executive of the James Whale Fund being stopped by so many people in the afternoon he missed the cakes and tea.. !!!

The James Whale Fund for Kidney Cancer fundraising stand inside the door with all the badges, Kidney cancer christmas cards and KC gifts on display, the welcome pack was so carefully thought out and the chance to sit in comfort if you needed a break was well planned. We knew there would be cancer patients at different stages of the kidney cancer journey attending and being able to relax away from the hustle of the main lecture room was a really good idea.

We had presentations from Prof Tim Eisen, Dr Paul Nathan and Dr Tom Powles and Debbie Victor the Uro/oncology nurse . A really good question and answer session, good chat and lots of hugging and air( and not so air)  kissing – whoo hoo  

So much to talk about and I know lots of people had more questions for the panel at the end which we didn’t have time to cover. For anyone who hasn’t completed their “Feedback/evaluation form” send it back to James Whale Fund   or go to our Forum at www.kidneycancersupportnetwork.co.uk  please do  send it back to us because there is the opportunity of that form to ask our speakers any questions.

I think it is important that when we do something like the Kidney Cancer Patient Day, we make it special, if we have patients & families travelling distances to be with us, then considering it is a first for many people, we have to make it worthwhile and we have to show the Healthcare professionals who came that we are serious about patients being put first and I ‘m convinced that means a good venue, good speakers, welcoming atmosphere and making sure we did the right things and gave people what they want from a day like that.

But a huge thank you to Sarah Ridge & Sharon  who put so much effort into to making the day such a success, to all our speakers, and especially fellow patients and wonderful friends Deb & Tony from Canada( we knew it would be good….. but that good !!!!) and to everyone who who joined us and made the day really memorable.

It was quite a day !!!!!!!!!!!!!!!

One thing I have to say is that there  were lots of people I wished could have been with us, not to be too maudlin but we have lost a lot of lovely friends to this awful disease  this year. I said a little private Hello to many of them because I know they would have been proud of what we did that day.

 

Take

Posted under General, Patient Day 18thNov2009, Rose Woodward

This post was written by Rose Woodward on November 30, 2009

A Reminder That This Blog Site is Multi-User

It’s been a while since I’ve mentioned this, but I thought I’d remind everyone that this site isn’t just for me, it’s for everyone.   Anyone can create a blog on here, it’s as simple as Registering (Click on the “Register” link on the left hand side menu under “User Control”).

The site uses the Standard WordPress software which pretty much every blog web-site uses.  If you want to know how to write a Post/blog then look in the “Help” Section in the left-hand menu (towards the bottom of the page), you’ll see a link called “How To Write a Blog”.

I’ve also made the site less Kidney Cancer centric which means any cancer patient/carer or family member can create a blog.

To also help it become less Kidney Cancer centric I’ve made the site accessible via 3 new URLs

I hope this helps a little and enables people to join together

Please sponsor me at either VirginGiving or JustGiving

Posted under Andy Thomas, General, Welcome

This post was written by AndyThomas on November 30, 2009

The Next Steps for Kidney Cancer Resource?

I’ve had to take a long hard think about the direction of the Kidney Cancer Resource over the last 2 or 3 months and I’ve drawn a number of conclusions.  Some are less palatable to me than others.

Kidney Cancer Resource has been going for about 3 years now (pretty much since my own diagnosis) and it’s been a real learning experience.  More recently however I felt that I needed to step back and look at why I set this up in the first place i.e. what were my motivations?

Initially I created the site because there was no single place on the web that had a fully aggregated library of information pertaining to Kidney Cancer.  At the time you had to really surf around and hope you didn’t run into too many sites that contained those odious people selling “snake-oil” pills and potions that have no other impact other than to inflate the creators bank account.

The idea was that I used a standard Wiki based format that enabled others to add to, change and correct any information within the site without the need to be a computer programmer or IT expert.  One of my biggest frustrations with Forums and mail lists is that the information gets lost very easily, and although there are archives, searching them is not a simple task and is very time consuming.  The intent was to make sure that the forums and mail lists could use it as library where they could point people at information to save the constant repetition (the typical “Hi I’ve just been diagnosed with Kidney Cancer, what do they mean by Stage and Grade?” type questions).

Lists and forums are invaluable as support/self help mechanisms and communities and I never want to say anything bad about them, I use them a lot myself, especially ACOR (KIDNEY-ONC) and The Kidney Cancer Support Network forum, when you need help and a freindly ear or advice there is nothing better than a community of people that have been through or are going through similar experiences, it’s as real as it gets.  My belief however was that an organic library would save time and guide people away from the “snake-oil” sales people to a place with trusted and relevant information. I was hooked in by some “snake-oil” potions myself and one of them made me violently ill …. Never again, it was frightening!

So has Kidney Cancer Resource achieved this? Well, I like to think yes, it’s achieved some of these aspirations. Greg Lance-Watkins and myself spent 100s and 100s of hours, days and months pulling the initial set of information together, nearly 3000 pages to be precise. It enables 4 things I think:

  • A Library for Kidney Cancer, Drugs information, a dictionary of terms etc etc
  • A place people can tell their stories and keep medical diaries (kind of like a blog)
  • A constant source of news.  As we see news article pertinent to Kidney Cancer these are added to the rolling news
  • A place where people who run campaigns related to Kidney Cancer could create simple pages with information.

To this end I think it’s been a success, and the readership back’s this assertion. What really hearted me the other day was when people came up to me at the James Whale Fund for Kidney Cancer Patient day and thanked me for providing the web-site.  Made me feel very warm and fuzzy :)

So what’s next then?  Well, after much deliberation and heart wrenching I’ve decided it’s time to re-think the direction and how we can take what’s good about the web-site, enhance that benefit and deliver it to patients, carers, families and friends.

I have the ability to track how many people read the site each day, what they read, and how long they stay on each page, where they come from (i.e. What brings them to Kidney Cancer Resource) and where do the go to once they’ve finished surfing the Kidney Cancer Resource site.  This has provided me with excellent feedback.  Some of it has come as a shock to me.  What do people read?

  • The rolling news section on the main page
  • The Basic information around Kidney Cancer
  • Some of the stories
  • Pages that I (or others) specifically direct people to e.g. Events, Drug articles

Harsh though it may seem …. that’s pretty much it.

The real thing I wanted to achieve hasn’t really happened as much as I’d like, and that’s for others to join in and add information to the site, it’s happened sporadically but not at the levels I’d hoped for, and to that end it is a full time job for one person to keep the site up to date, factual and meaningful.

All this sounds very much like I’m going to close the site down.  Well that’s partially true. The intention will be to take what’s good about Kidney Cancer Resource, enhance those strengths and merge them into the James Whale Fund for Kidney Cancer’s web-site where I feel it can do more good.

The thing that makes me nervous about Kidney Cancer Resource is that it could become dangerously out of date and actually end up providing the wrong information to patients. Unless other users are willing to help keep the information solid then it’s too much for one person alone, but worse it becomes a liability.

As I said, this has been on my mind for a number of months now.  I spent some time at the Patient day talking to people, especially our friends from the KCC (Kidney Cancer of Canada).  What they have done over the last 2 or 3 years is tremendous.  They made a key point to me in their talk and that was “we’re kind of sick of seeing web-sites popping up that describe what a Kidney is and what Kidney Cancer is” (word’s to that effect), and do you know what?  They’re right.  What you need is what they’ve produced which is a pamphlet full of enough relevant detail to help patients through the maize of this disease, not something that tells them what they already know.  I was given their kind permission to take this document and digitise and modify it to make it UK centric.  I have also asked a couple of the Oncologists that were at the meeting to help me go through this and make sure it has their approval from a UK perspective.

I am firmly of the belief that as a global community information provision is something that crosses all international boundaries, and if we all work together we can make this information organic and relevant.  I am guilty of the sin of trying to go it alone and make my mark, however I am now convinced more than ever that this has to be a collective effort.

Think how much we could achieve with our battles against NICE if we’re able to stand behind information that has international recognition, backed by the world’s leading specialists … think how much that could potentially help our own UK specialists when they draw up their guidelines for new drugs and treatments.

I hope others in the Kidney Cancer community in the UK will look to do the same type of thing i.e. Join our efforts together under one umbrella.  For me, I hope I bring technical expertise and energy to the table, however I want to make sure I don’t spread myself too thin otherwise their wont be enough to go around.  So it makes more sense for me personally to channel that energy into a single organisation under the banner of the James Whale Fund for Kidney Cancer.

I’m as impatient as the next person (probably more so), however I realise I can’t move all this information overnight.  This is my challenge and it will take time.  Normal service will clearly continue until it is replaced and I’ll give updates as we progress.

So it’s not goodbye to Kidney Cancer Resource as such, it’s hello to a new era and I hope something better and of more value to the wider community.   2010 is the year to get it done!

Please sponsor us at either VirginGiving or JustGiving

Posted under Andy Thomas, General

This post was written by AndyThomas on November 25, 2009

An Inspirational Kidney Cancer Patient Day…

It was an inspirational day last Wednesday at the James Whale Fund for Kidney Cancer’s Patient Day.  I’ve never been to a patient day before and I wasn’t sure what to expect really.  I knew it would be a great opportunity to meet people in a similar position and a great day to network in general.  All of that turned out to be true.

What really got me was that the specialists that turned up to talk were so willing to answer our questions, and there were a lot of questions.   It must be hard and I was especially impressed that they’d given up their time like this.  It was insightful.  If the Q & A session at the end had been allowed to go on I’m pretty sure we’d still all be there.

We also had an inspiring talk from the Kidney Cancer of Canada people (Debbie and Tony), what they have achieved in a short space of time is astounding and it shows what can be done if we all work together.  The biggest lesson for me from the whole day is that if all the different Kidney Cancer groups were to come together in the UK then we could achieve even more.  One of my biggest concerns is that in the UK we are a bit diluted, but we are gradually bringing organisations and people together and the Patient Day was a great example of this.  My belief is that we’ll get things done quicker that way and make a bigger impression.

I took about 6 pages of notes during the day but I wont start trying to detail them out because I know the James Whale Fund will be sending out a newsletter with the same information.

For me I just wanted to say a big thank you to the team that put this together, it all went off without a hitch and was well organised with a good balance of speakers and topics.

What have I learned? Well I know we still have to fight on for the right to the drugs that are so badly needed and yet are still denied by NICE.  If the oncologists that came along to our event feel they are not listened to then it’s even more important that we all join together in the UK and take this to NICE directly.

This blog wont do the day justice I know, but my hope is that another one will be held soon.  I came away feeling that this was the catalyst to something new and exciting for Kidney Cancer in the UK, the more we bring people together like this the more we can achieve.

Please sponsor us at either VirginGiving or JustGiving

Posted under Andy Thomas, General, Patient Day 18thNov2009

This post was written by AndyThomas on November 22, 2009

Arch to Arc 2010 – Update and Reminder

Hi Everyone !  It’s been a couple of weeks since I wrote to you all and gave you an update as to where we were.

Well, things are coming along a pace, the team is negotiating hotels etc and it all seems to be getting there as planned, however there is still much to do and we need your help!

The good news is that we’re getting more and more interest from people wanting to cycle which is very encouraging …. Well over 40 so far !!  

Now, here’s the tough bit and where you can help.  As I’ve mentioned before we are trying to keep the numbers in at around 20 people to make sure it goes off without a hitch in the first year……  so,  you’ll need to get your skates on to sign up and get your £300 deposits into the fund by Jan 2nd 2010 as places will go fast.  To date we have already raised over 17% of the £20,000 target which is great news.

I sent out a notification to everyone a week or so ago asking folks to setup their VirginGiving pages as soon as possible.  If you are struggling with VirginGiving (as a number of people have been) then feel free to create a JustGiving page instead if you find it easier, but be quick as we’ll will be cutting off any new entries once we get to 20. 

I realise a number of you have signed up to say “Yes” on the Facebook page,  however we will still need the firm commitment of a ViginGiving or JustGiving page + the £300 deposit … this is what will secure your entry.

So, to avoid disappointment be as quick as you can!

As always if you’ve got any problems creating your pages or you need any aspects of the event explaining then please don’t hesitate to contact either myself or Nikki Grant at the fund.

http://www.jameswhalefund.org/ArchToArc2010.html

Thanks for the support!

Please sponsor us at either VirginGiving or JustGiving

Posted under Andy Thomas, Arch To Arc 2010

This post was written by AndyThomas on November 20, 2009

James Whale Fund gets an Award

JAMES WHALE FUND GETS 4 **** AWARD

Macmillan Cancer Support gives 4 Star rating to the James Whale Fund booklet

The 24-page booklet, ‘Understanding Kidney Cancer’ produced by The James Whale Fund for kidney Cancer was today awarded a 4 Star rating and high ‘readability’ score by the prestigious Directory of Information published recently by Macmillan Cancer Support.

The Macmillan Directory reviews 1,129 booklets, leaflets, audio visual materials and websites all of which Macmillan judge to see how useful they are to cancer patients . They then award each piece of information a score so that cancer patients and our families, but also Clinicians and the Nurses who look after us, can be sure of getting good clear guidance.

The Booklet called “Understanding Kidney Cancer” (180KB) was published in response to an urgent need for good accurate and upto date information about Kidney Cancer, it’s treatment and how to cope with a diagnosis of kidney cancer. The Fund wrote a 24-page, A5-sized guide for patients and carers as one of the first priorities when James launched the Fund. The booklet, first published in January 2007 and updated in November 2008, is available as a downloadable PDF. Simply click this link…

I was invited to the British Association of Urological Nurses UK conference in Torquay yesterday and asked to give a talk to all the Nurses and guest Clinicians about kidney cancer from a patient viewpoint, I took along loads of copies of the JWF booklets and the CNSs and Oncology nurses there were unanimous in their praise for the booklet. .
“It is so good to have something to give kidney cancer patients. This booklet is excellent because there is no scare mongering; it gives you hope and is very realistic and practical”
said Debbie Victor, Uro-oncology nurse specialist, Royal Cornwall Hospital, Truro.

So to get a 4**** rating and a high ‘readability’ score by the prestigious “Directory of Information Materials for People Affected by Cancer 2009/10″ was really quite an accolade for the Fund and everyone who contributed to it..
If you would like a copy we can send you one or you can download it and read on your computer or print it off yourself. If you think your clinic or hospital would like supplies please email your requirements to Sarah – sjr@jameswhalefund.org
at the James Whale Fund for Kidney Cancer.

Posted under Rose Woodward

This post was written by Rose Woodward on November 5, 2009

The Latest News From the Arch To Arc …

The time has come to ask for everyone’s commitment to the event. There are twenty (20) places available on the event and these places are fast being filled, so it’s time for the next stage!

For those of you who have not already read, there has been a slight change of the route which you can see on the James Whale Fund For Kidney Cancer web-site.  Because of the logistics we’ve added an extra day and we’ll now be travelling via Dover rather than Newhaven.  Newhaven is very restrictive as there’s only 2 ferries a day at very awkward times, and we felt it best to make it more gentle and fun event rather than feel we’re chasing ferry times too much.

If you want to help but can’t cycle then can I please ask you to donate as much as you’re able to the cause by clicking on this Link

Can I ask that each of you that are cycling with us to create a Virgin MoneyGiving page  and start your fundraising activities now. It may seem early in the game, however we are getting close to Christmas and the New Year and June will be upon us sooner than we think. To create a page, follow these instructions:

  • Goto VirginGiving
  • Click “Start FundRaising”
  • Click “Organised Event”
  • Select June 2010 as the “Event Date” and then Click “Find Event” or Search for Arch to Arc as the event name.
  • Select “Arch to Arc Cycle Ride” from the list then Click “Next” (Make sure that it’s the James Whale Fund for Kidney Cancer)
  • Put in £1000 in your “How much are you planning to raise”
  • Select “No” to “Has your Charity contributed to the cost of the event”
  • Select “Just me” in answer to the “Are you fundraising on your own or with other people?*” question (seems a bit odd given we are a team, but trust me it does odd things if you select “With others”
  • Then Select “Next” and follow the instructions from there, where you can put up a photo and description etc.

That should be it, from there you’re up and running and ready to start!!

Now for the official part
———————————
On January 2nd 2010 we will be asking for a £300 deposit from each rider. If you’ve already collected this amount or more on your Virgin MoneyGiving page then you wont need to send the deposit. The deposit will be used by the fund to ensure we’ve booked all the ferry, train and hotels well in advance.

There are 4 simple ways of getting the deposit to the fund:

  • The simplest way by far is to raise £300 by 2nd January 2010 on Virgin MoneyGiving, that way you don’t have to pay personally.
  • Add £300 to your Virgin MoneyGiving target (i.e. £1300) and donate directly from there. I think this is the simplest way and gets your Virgin MoneyGiving page on the way!
  • Go to the James Whale Fund for Kidney Cancer web-site and click on the “One-Off Donation” link on Home Page. This will take you to PayPal, follow the instructions from there.
  • Send a cheque for £300 to this address:

James Whale Fund for Kidney Cancer
46-48 King Street
Cambridge
CB1 1LN

Once you have raised and donated a total of £1,000 from sponsors, we will return your deposit of £300 if you have paid the £300 personally. For example – if you have raised £900 in sponsorship, then you would receive £200 from your deposit. If you raised £1,000 or over, and personally paid your deposit, you would receive a full refund of £300.

If you fail to raise £1000 by the day of the event we will ask you to make up the difference between the amount you have raised through sponsorship and £1000.

Remember, you have between now and January 2nd 2010 before the deposit is due, so use this time to raise as much as you can as it may save you having to pay the deposit.

As soon as we’ve reached 20 people, with 20 pages then I will send a mail round saying that entrants are closed. So this is on a first come first served basis! (be aware that we have well over 20 people who have expressed and interest in the event). If any of the 20 backs out for whatever reason and you were unable to secure a place then we will call upon people from the reserve list.

If you’ve paid the £300 deposit personally and you have to pull out of the event before the 28th February 2010 then you will receive a full refund, after that the deposit becomes non-refundable.

Please could you also all send me your e-mail address and contact number so we can get in touch more directly as and when required. There are a number of people not on Facebook that are also coming along and it would be easier if we can do this kind of stuff via e-mail as well.

End of the official part
——————————-
I will keep everyone informed via the James Whale Fund for Kidney Cancer Arch to Arc web-page. I’ll also be publishing progress via the KidneyCancerBloggers web-site.

That’s it for now! We have a £20,000 target to reach and we’ve already raised about £2000 of this, so now it’s your turn!

If you find any of this confusing or you have any questions then please feel free to call either myself, Nikki Grant or Sarah Ridge at the Fund on 01799 585 033.

I look forward to you taking part and good luck with the Fund Raising!!

Please sponsor us at either VirginGiving or JustGiving

Posted under Andy Thomas, Arch To Arc 2010

This post was written by AndyThomas on November 5, 2009

Some Thoughts Over the Weekend on Rarer Diseases…..

I found myself yesterday and today feeling frustrated and maybe a little upset by something I read on the internet yesterday afternoon as I was facebooking. I’m 100% sure the comment wasn’t meant to be taken in the wrong way, and indeed I didn’t feel any ill will or even offence, just the frustration of knowing that there is so much work needed to raise awareness for rarer conditions (be they cancer or otherwise).

I have a friend who’s got a debilitating disease called Lupus (Systemic Lupus Erythematosus – SLE), nasty little blighter it has to be said. The symptoms mean you are unable to tolerate any form of light be it natural or artificial, any exposure causes severe blistering of the skin, it can also impact your joints, kidneys, and other organs. I don’t know that much about it other than how it impacts my friend on a day to day basis, and that person shows enormous strength against much adversity. If you want to know more then you can check out this Medscape article, it’s a bit detailed, but then again I’m used to looking at the medical mumbo jumbo. I can only imagine the physical pain this must cause let alone the mental anguish of feeling trapped by one of the most natural (and supposedly life giving) things in the world….light. For those of you wondering, no, this isn’t just a nasty touch of sunburn.

Anyway, it got me thinking. I can only relate my experiences directly to Kidney Cancer but if you’d asked me 3 years ago if I knew what Kidney Cancer was and what treatments were available, how prevalent it is, how many people live, how many people die… well, I wouldn’t have had a clue. In fact I would have more than likely said “Didn’t know you could get Cancer of the Kidney, and anyway aren’t all cancers the same?” If I’m really honest I used to bury my head in the sand when it came to any type of disease, but especially the dreaded “C” word. I assumed, like I suspect many others, that all cancers are treatable now if you catch them soon enough, you just zap it with a bit of radiation and a bit of chemo, and Bob’s your Uncle… as long as you get past 5 years you’re cured!! (or at least in remission).

Well for Kidney Cancer that couldn’t be further from the truth. Kidney Cancer is an aggressive little bugger that doesn’t respond to radiotherapy, nor does it respond to chemotherapy. Kidney’s by the very nature of what they do are tough little so and so’s and can resist these treatments. Like all cancers, cutting it out seems to be the best starting point, and if you’re lucky enough (like me I hope) that should be it. Generally in Cancer treatments they try and hack out the offending items and then they follow up with Chemotherapy to ensure it’s all flushed out. You can’t do the Chemotherapy bit with Kidney Cancer, so if you’re unlucky and it’s already spread then your next course of action is either more surgery and/or drugs that will help maintain and stabilise any future growth. When Kidney Cancer spreads it doesn’t morph into a new type just because it’s now in your lymphs, brain, or lungs, or bones etc, nope, it stays as Kidney Cancer. Even for me I’ll never get that 5 year remission thing, we’ve just got to live with it and hope we stay NED (No Evidence of Disease).

These Kidney Cancer drugs I talk about are some of what we are fighting for in the UK, fighting to make them freely available on the NHS for everyone. In the scheme of things drugs such as Sutent, Nexavar, Torisel, Avastin and now Affinitor are still new on the market, and have added enormously to the weapons Oncologists have in their armoury. And just in case you think “that’s all well and dandy then you’ve got treatments”, well, they don’t all have the same impact on people, some work for some people and not for others. What’s infuriating is that our Oncologists know these drugs can work and yet N.I.C.E. refuse to approve them all which would enable our medics to mix and match these drugs for patients. These are the drugs that give Kidney Cancer patients a quality of life that everyone deserves, without them there is no quality.

Drugs aside, what this weekend has highlighted to me is the need to continue to raise awareness as well. If nothing else I hope we can raise enough awareness to make people realise that not all Cancers are the same, they display different behaviours, some are more aggressive than others, treatments are different, symptoms are different, the research required is different, mortality is different etc etc, but more than anything else they have different perceptions in the public’s eye. Ask someone about Lung cancer, Leukaemia or Breast Cancer and they’ll tell you’ve they’ve heard of it, they’ve probably even given money for it, they’ve sadly probably known (or know) people who suffered from it. Like Lupus (by the sounds of it) what needs to happen is a heightened awareness, why? Well because more money and research is available for the better known diseases, more money is given by the PCTs and N.I.C.E for the better known diseases. A sense of balance is needed, and I suppose this is the greater fight.

Why the comparison with Lupus? I’m not for one minute suggesting there are any similarities in terms of the disease, but I’m willing to bet that they have a similar need when it comes to raising awareness and availability of drugs. Lets face it if people hadn’t stood up and rattled their sabres and tins for Breast Cancer, Lung Cancer, Leukaemia and the like then there would be no treatments, no awareness, no research. Each cancer strain and disease requires different types of research …. they are not the same.

Please sponsor us at either VirginGiving or JustGiving

Posted under Andy Thomas, General

This post was written by AndyThomas on November 2, 2009