2009 Update and my Christmas wish

Nearly a year has passed since we started this forum and nearly a year since we all started working together – Andy Thomas and his marvellous kidney Cancer Resource, Clive Stone and his inspirational “Justice for kidney Cancer Patients”, Julia Black , and I with the Kidney Cancer Support network, our lovely Jane Thompson with the Jane’s Journey film, Bill Savage and his work with N I C E and the Cancer Networks … so many people joined together with a common aim to try and make a better, easier world for the kidney Cancer Patients who come after us – I think we have succeeded in our small way and I just know the work will continue.

Huge thanks is due to all our friends at the James Whale Fund for kidney Cancer especially to James Whale for giving us his energy and the chance to make a difference . Nick Turkentine for his skill and professionalism and bringing together such a good cohesive team and Sarah – organiser extraordinaire – for looking out for us all and making things happen !!! and to Jo, Nikki, Sharon, Paul, Malcolm and the rest of the gang who do such good work for to improve the lot of kidney cancer patients – Thank you from the bottom of my heart.

We have started some projects this year which should help change the way Kidney Cancer Patients receive their treatment in the future. We had a KC patient delegate at all the major political party conferences this year seeking to raise awareness of kidney Cancer with Politicians and reinforce the need for additional treatment options. We started the online Kidney Cancer Nursing Course for Urology CNS’s which will give them additional skills and knowledge specific to kidney cancer. We have had expressions of interest in joining the James Whale Fund for Kidney Cancer Medical Advisory Board and we already work in partnership with many of the leading renal Oncologists in the UK. We have produced updated patient information leaflets, produced “ U Tube” videos and learning tools and our aim is to continue this area of work.

Globally on behalf of the Fund I have been working with friends from Canada & Germany to bring together patient advocates from various KC groups from around the world to form a coalition to promote research and provide a stronger voice for patients. The James Whale Fund for Kidney Cancer has been talking to the Regulatory bodies in the UK and the EU to make sure we get a place at the table whenever Kidney Cancer is on the Agenda.

And of course many of us met up at the 1st James Whale Fund Kidney Cancer Patient Day in London November, this was a great day with patients working alongside expert renal Clinicians and according to the feedback was a huge success and will be an annual event in the future.

As well as all the above we have continued to support individual patients & local KC patient groups ( and we still need many more). We have provided feedback to the Pharmaceutical companies about patient information, and worked with the NHS to provide a kidney cancer patient perspective at various training days and conferences for nurses and Clinicians.

So all in all it’s been quite a year. If any of the above inspires you – please do get in touch because we always need more volunteers as there seems to be so much going on and so few hours to do it in !!!

As always we have had our low points and I have lost some very dear friends to this awful disease; friends who played an important role in securing the approval of Sunitinib our first N I C E approved drug to treat metastatic disease; patients like Ken Potts, Jean Murphy, Stephen Dallison, Kathleen Devonport, Kay Hopkins, David Basey and sadly many more.

It’s because we have to change things and ensure other patients never have to go through what these patients endured that we will work even harder in 2010 to make sure we get the best possible treatment approved for everyone who needs it.

We have some wonderful Clinicians working alongside us, and lots of people like those mentioned above prepared to give up their time to help us . In short we are making a difference and so we shall keep on keeping on.

I hope everyone has a lovely day tomorrow, but of course we know it will be a difficult time for others who will be missing husbands or wives, mothers or fathers so at some point tomorrow please raise your glass to our absent friends.

My wish is for everyone to have a Healthy and Peaceful 2010,

With love from Rose Woodward

Posted under Cancer Drugs, General, Oxford Support Group Demonstration 27-Aug-08, Patient Day 18thNov2009, Rose Woodward

This post was written by Rose Woodward on December 24, 2009

Kidney Cancer Canada friends

Those of you who came to the James Whale Patient Day in London see  www.jameswhalefund.org  in November will have great memories of the inspiring talk from my friends Deb and Tony who came all the way from Canada to talk to us and what a talk it was !!! Everyone was staggered by their tales of fighting this disease and establishing Canada’s first Kidney Cancer Supprt organisation.

Yesterday I reveived this note from them…………

Four videos of Canadian kidney cancer patients and caregivers have just been uploaded to

http://www.youtube.com/user/KidneyCancerCanada

These videos provide not only valuable disease specific information, but also hope and inspiration for those fighting this rare form of cancer.

KCC would like to share these videos with as many people as possible, and welcomes the opportunity to connect with your organization/blog/website through these videos or other content that you would like to share.

Here is a brief description of the videos:

Tony Clark – “Live with the disease”

Tony Clark talks about how he is living a full productive life with kidney cancer by using sequential treatment therapies. Tony is the Chair of Kidney Cancer Canada.

Deb Maskens – “Live life in the present”

Deb Maskens talks about how she is fighting stage 4 metastatic kidney cancer through participating in a clinical trial. Deb Maskens is the Vice Chair of Kidney Cancer Canada.

Karen Ross – “Live the days that you have”

Karen Ross talks about her life experiences as caregiver to kidney cancer patient and husband David Ross. Karen is also Kidney Cancer Canada’s volunteer Director for New Brunswick.

Wally Vogel – “Anatomy of hope”

Wally Vogel was diagnosed with stage 4 metastatic kidney cancer and given only a few months to live. Because of new kidney cancer treatments becoming available Wally is alive and well today with no evidence of disease (NED).

Posted under Cancer Drugs, Events, General, Patient Day 18thNov2009, Rose Woodward

This post was written by Rose Woodward on December 11, 2009

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

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.

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Posted under Andy Thomas, General, Patient Day 18thNov2009

This post was written by AndyThomas on November 22, 2009

A Whale in Wales? and Rolling Stones?……. Whatever next!

There’s lots of activity at the moment on the Kidney Cancer front, and it’s such a pleasure to see the momentum picking up.  Here’s a few highlights …..

  • Clive Stone is “rolling” out his campaign again for the new drugs to be made available.  Please, please all you Kidney Cancer patients/families/friends respond to Clive’s request at this link.  Thanks to Clive’s efforts we had enormous success last year when we all campaigned outside the NICE HQ in London, so lets see if we can do it again!
  • James Whale will be hosting and event in Wales, Swansea at the Dragon Hotel on 21st November– “Whale in Wales” I suppose you could brand it.  This sounds like a great night out, if you want more information then check out this link.  As I’ve said before these evenings are always great fun.  If you’ve ever had anything to do with James before then you’ll know he’s not exactly backwards in coming forwards which always adds an extra spark to any event.
  • On top of this a lot of work is going on in the background leading up to the Kidney Cancer Patients Day on 18th November.  Make sure you all sign up to this, it’s the day after my birthday and I’ll be deeply offended if you don’t come along !

On a personal front it’s been one of those weeks where I appear to be doing nothing and yet there is so much going on I hardly know where to start.  A definite feeling of spinning my wheels.

Work’s in complete turmoil as we wait patiently to discover whether we’ve got jobs or not, motivation is down on a grand scale, and they’ve set the date to mid/end of November to decide our fate.  This date has slipped twice so far, so you can only imagine just how much people’s sensitivities have risen.

Another thing that’s been praying on my mind is that my Father’s also due to go into hospital next week for an operation so I’m going to have to figure out a way of getting up to Yorkshire to see him.  He’s having a pretty rough time at the moment with one thing and another, just wish we lived closer.

Lately I’ve found myself focusing more and more on things I can control in my life rather than things I can’t (probably a good thing).  So, to that end at least I have a plan in place if I’m made redundant.  My plan is to take a year out and focus my energies on the charity work and make sure that we make the Arch to Arc a success the first year round.

Also I want to be able to help The James Whale Fund for Kidney Cancer out as much as I can on the IT front to help build the brand.  As a starting point I had a great night out with Paul Fox of Fonda on Monday to talk about all things “geek”, so watch this space over the coming months.

It is a risk to take a year away from work I admit, but I think that it’s a risk worth taking, and to be honest I can’t see it looking that bad on my CV if I’m filling my time with things that are productive.  My real hope is that the time out will lead to other things as I always believe that things have a way of working themselves out as long as you don’t sit on your behind doing nothing.  I now worry more about not taking this opportunity than I do about any financial impact, if I dont take it it will be an opportunity lost.  Let’s see!

Please sponsor us at either VirginGiving or JustGiving

Posted under Andy Thomas, Arch To Arc 2010, Oxford Support Group Demonstration 27-Aug-08, Patient Day 18thNov2009

This post was written by AndyThomas on October 28, 2009

A Day for Kidney Cancer Patients……..

It’s the James Whale Fund Kidney Cancer Patient day on the 18th November.  The day after my birthday as it happens, but that’s a different story, however, as a slight aside,  for those of you who are wondering what I want for my birthday, well that’s simple, what I want is a donation from each of you to the Arch to Arc challenge. We’ve raised 6% of the £20,000 target so far (not bad for a couple of weeks effort), but still a long way short of the target.

Anyway, moving on, I have to say I’m really excited about the prospect of meeting other Kidney Cancer patients, their families and carers.  It’s so hard when we’re all stuck behind computers and forums and facebook etc…. so much nicer to meet face to face and exchange stories and experiences.  Every time I’ve been to something like this I’ve never regretted it and have always come away having learnt something, at the very worst I’ve made new friends.

The great thing of course is that it’s entirely free for Kidney Cancer patients, families and carers, in fact I like anything that’s free, but I suppose that’s the northerner in me coming out!

I’ve been to a fair few of the James Whale Fund events over the last couple of years and I’ve enjoyed each of them, and met all sorts of people that have enriched my life in one way or another. So not to sound too much like an advert …. Sign up and  get yourselves along to it! (I’ll be the one in cycling shorts and a bow tie).

See you all there!

Posted under Andy Thomas, Patient Day 18thNov2009

This post was written by AndyThomas on October 16, 2009