Kidney Cancer Careline

Welcome to Kidney Cancer Care UK
James Whale Fund for Kidney Cancer, the UK’s leading specialist kidney cancer charity, will be developing this site to provide a variety of information on kidney cancer that is relevant to patients, their families and renal health professionals.

0330 111 2 333
Monday, Tuesday, Thursday & Friday 10am – 4pm

Wednesday 10am – 6pm

Saturday & Sunday 4 – 6pm

You can leave a message or email us outside these times.
This is a free service, but you can make a contribution online

Call charges are the same as for geographical landline numbers, even from a mobile phone.
What is Kidney Cancer Careline?
It is a telephone helpline providing information, support and encouragement to kidney cancer patients, their carers and families. It became active on 10 March 2011, World Kidney Day.

Who will I speak to?
Members of our friendly and helpful patient support team are all cancer patients or nurses. They all have firsthand experience of cancer and knowledge of the kidney cancer treatment pathway. They are happy to talk with you and offer help and support based on their personal experience of living with cancer.

How will it help me?
Our Careline provides the means for patients to make contact with someone who knows exactly how you might be feeling; this understanding and empathy from another patient can provide a great deal of comfort during your cancer journey.
We know that if you are a patient or a family member of someone who has been diagnosed with kidney cancer, one way to make life easier is to speak to someone in a similar position. Our Careline can also provide information about the process for accessing the latest treatments for kidney cancer, some of which are not routinely funded by the NHS. We can guide patients and their families through this process, as well as providing information about government funding schemes, such as the Cancer Drugs Fund.

Is there any other support you can offer?
If you would prefer to write to us, here’s our address
James Whale Fund for Kidney Cancer
The Old Coach House
High Street
Harston CB22 7PZ
And you can always email our patient support team or you can join other patients and carers on our kidney cancer patient support network

Would you like to share your experiences?
If you have been diagnosed with kidney cancer, have received surgery, or have cared for someone with the condition and would like to share you experience with others, please let us know by email or by calling 0330 111 2 333.

We’re here to help you now – and in the future
This Kidney Cancer Care website will be developed to contain a wealth of information about kidney cancer, which has been written for patients, carers and family members.
The site intends to cover topics such as the signs and symptoms of kidney cancer, how kidney cancer is diagnosed, surgery and current drug treatments for kidney cancer.
In addition, topics such as the roles and responsibilities of health care professionals, diet and complimentary treatments, palliative care, practical advice, and emotions and feelings about cancer will be covered.
There will also be a section on the various guidelines for kidney cancer treatment and the government funding schemes for access to the latest drug treatments. In the meantime, information about kidney cancer can be obtained through James Whale Fund’s website

Important notice

All medical information and other commentary and/or material referred to or provided through or by Kidney Cancer Care UK, and other materials posted on our website or provided through our telephone service are not intended to amount to advice on which reliance should be placed, and is not intended to replace consultation with a qualified medical practitioner. We therefore disclaim all liability and responsibility arising from any reliance placed on such materials by visitors to our website or users of our telephone helpline, or anyone who may be informed of any of its contents.

Posted under General

This post was written by thefund on July 25, 2011

Tags:

Kidney Cancer Christmas Cards…..

For those Scrooges amongst us like me who haven’t got round to buying their Christmas Cards yet then why not buy them from The James Whale Fund for Kidney Cancer and make a difference.

Let’s face it Kidney Cancer doesn’t get much press and we really need to get this front and centre. So go on, order some from the Fund now by clicking on this link.

Posted under Andy Thomas, General

This post was written by AndyThomas on December 2, 2010

Are we stuck with a new kind of Postcode Lottery?……..

I was lucky enough to go to the House of Commons last night to a Cancer Research UK reception as a representative of the James Whale Fund for Kidney Cancer.

I had high expectations about the meeting given the new announcements about NICE being stripped of its powers and the Cancer Drug Fund, however it was probably unfair of me to have set those expectations. The evening was a culmination of a whole days effort that CRUK had put in meeting MPs with their key 70 or so ambassadors (volunteers). So for them it had been a hard day of lobbying.

The reception was 2 hours long and more of an opportunity to grab a quick drink and network. There were some short speeches to reiterate the work CRUK is focused on. Their focus is on research and early screening and to that end they spend around £350m each year, and I’m glad for that!

I managed to corner Harpal Kumar (CEO of CRUK) and I asked him what his views were on the new announcements. His views seem to echo many of ours (and without quoting him directly) he felt that now that we are moving to a more localised value based system the postcode lottery could potentially worsen and we need to keep a strong eye on it to ensure that there is full transparency. One way to measure this would be to maybe have direct comparisons for each SHA area, so for example, it would be easy to see if an SHA was failing if the outcomes for a Kidney Cancer patient were worse than another area.

At the moment, this is still all hypothetical, because the Government is yet to consult on its plans for a value based system. However, I still think we’re stuck with this whole Qualy nonsense whatever happens, it’s all “Value Based” to me. I’ve always wanted to see the real calculations behind Qualy but have only ever been told in the most patronising fashion “It’s too complicated for the likes of you”. Well if it is or isn’t I’d like transparency around it and be able to have public access to it.

I worry; the whole “Lets put the power into the hands of the local people” isn’t solving anything as far as I can see and may well make it worse. It also gives the government the opportunity to potentially wash their hands of it saying “it’s down to each local area to manage its own budget and we’ve given all we can with the new cancer fund”. OK, so this is just my own personal view and I could be being overly pessimistic.

Suffice to say I believe that the battle with the Postcode lottery and access to new Cancer Drugs is far from over. The sooner the authorities wake up to the fact that beyond surgery there is NO CURE for Kidney Cancer and the new drugs are the only available treatment. Drugs that not only extend life but also give quality of life. If it’s good enough for other countries such as the USA and other parts of Europe then why not the UK? Sorry Mr Cameron but if you can afford to have a personal photographer paid for out of tax payers money then methinks priorities are still a bit of a mess.

The evening was fantastic and thank you to CRUK for letting me come along.

A slight aside.  It was of some comfort to me that the work CRUK does is complementary rather than overlapping with the work the James Whale Fund for Kidney Cancer does. To me they offer different services to the patient. This is a good thing as one of the thoughts I have struggled with in the past is why we have so many different cancer charities all seemingly doing the same thing and all after the same funds. Well, there is a differentiation in what they all provide e.g. direct patient support, palliative care, lobbying, awareness raising, research etc etc i.e. there is room for everyone as long as we stay focused on our core strengths and missions. Also, whilst CRUK is clearly a strong lobbying body and can exert enormous pressure when required it’s important to have multiple organisations lobbying for the needs of patients with different cancers as well (attacking from all sides for want of a better way of expressing it).

Please sponsor me by clicking on either of these links VirginGiving or JustGiving

Posted under Andy Thomas, General

This post was written by AndyThomas on November 4, 2010

Article Cancer Drugs Fund to get £200m a year

Rose Woodward – Patient Advocate

At long last…… confirmation that the

Cancer Drugs Fund to get £200m a year  

There was good news for cancer patients in England this week after the government confirmed it will provide £600 million for a three-year fund to improve access to new cancer drugs on the National Health Service.

There had been fears that the pot may be reduced under the current spurt of cost cuts, but the Department of Health announced yesterday that £200 million a year will be made available for the Cancer Drugs Fund from 2011 to 2013. 

The move is designed to help patients get better access to therapies recommended by their specialists, even if they have not been approved by cost regulator the National Institute for Health and Clinical Excellence, giving clinicians yet more power to dish out the treatments they feel are the most appropriate.

In addition, it is hoped that the extra cash pile – which is separate from existing Primary Care Trust budgets – will also help to improve the country’s ranking in terms of the provision of innovative cancer treatment to patients, as it is low on the list compared with many of its global peers.

Just a few weeks ago the government said it is has also set aside £50 million for an interim fund to help patients get treatment with drugs that have the potential to extend survival or improve quality of life before the fund ‘proper’ is launched next year, with clinically-led panels deciding on how to spend this money for patients locally.

The move does not take away from NICE’s remit, as the Institute will continue to appraise most significant new drugs and will have an important part to play in the government’s plans to switch to a system of value-based pricing for new medicines when the current Pharmaceutical Price Regulation Scheme expires, it said.

“Our longer-term plans will change the way we pay for drugs so that patients get better access to drugs and the NHS and the taxpayer get better value for money,” commented health secretary Andrew Lansley.

Consultation launched

The DH has now kicked off a consultation over its plans, seeking public opinion on the arrangements and other proposals for the fund’s operation, including ways in which patients and clinicians can be supported to make the best treatment decisions and what the scope of the Fund should be.

The Association of the British Pharmaceutical Industry has welcomed the launch of the public consultation and the government’s commitment of £200 million a year to help boost patient access to innovative cancer treatments.

Director-General Richard Barker said the consultation raises many important questions about how the fund will operate, such as “whether the fund should be administered at regional or national level and how to ensure that NHS cancer patients across England have a fair, timely and equal opportunity to benefit from the fund”.

The consultation will run until January 19, 2011.Its really important that as many cancer patients and families complete the consultation document and let the NHS know how we feel and to stress the need for this Cancer Drugs Fund to be continued for as long as some people in the NHS wish to refuse treatment to cancer patients.

 Please contact me if you would like a consultation document sent to you by email..

contact@kidneycancersupportnetwork.co.uk

or download it from our patient forum at     www.kidneycancersupportnetwork.co.uk

Rose Woodward

Posted under Afinitor(aka Everolimus/RAD001), Avastin, Campaigns, Cancer Drugs, General, N.I.C.E., Nexavar, Patient Day 17thNov2010, Rose Woodward, Social Medicine, Torisel

This post was written by Rose Woodward on October 28, 2010

Rose Woodward……….. www.kidneycancersupportnetwork.co.uk

Just finishing the presentations for the 1st ever International Kidney Cancer Conference for Patient Groups to be held in Frankfurt next weekend…leaving on Thursday and the Conference is Friday , Saturday and Sunday so I will be returning home on Monday…. I think this is going to be so valuable – we have all worked very hard to make it happen and the support has been tremendous.

We have invited every single Kidney Cancer Patient Organisation we know about to attend and we will have representatives from 16 Countries meeting with us;  UK, Germany, Canada, Africa, Australia, India, Eastern Europe, USA  etc and it has been great to see their enthusiasm for the project.  Our leading renal Clinicians have been very supportive of our starting up this type of Coalition  which was desperately needed and we are lucky with those who have chosen to attend and talk to us about their work, This is a patient led patient orientated initiative. We thought of it , we set about making it happen .

 By Patients for Patients about Patients !!

We have a very basic start – up website here… have a look.

Our website is currently under construction – but below you will find the main documents for our Conference EXPANDING CIRCLES.

 I’m so looking forward to meeting everyone, It was wonderful to meet Ken Youner and Jay Bitkower  and Gilles Frydman earlier in the year when we set-up the organising committee.  Markus Wartenburg and Dr Marion Beier have been doing so much work to make this happen.  Deb Maskens and I have been working together on some presentations – quite a double act !!! I joked to say we should hire ourselves out  for wedding, birthdays and BarMitzvahs for fundraising  !!

More to come !

Posted under Events, General, Rose Woodward

This post was written by Rose Woodward on September 5, 2010

A long time since my last blog……

It’s been ages and ages since I last write a blog but I’ve been so busy just settling down into my new job, riding bikes, buying dogs, roller-skiing and trying to sleep that there hasn’t been time.

However I thought it would be worth publishing the Arch to Arc video so you can all see what it was like, and hey it might even encourage some of you to sign up for it next year ………. Here it is!


Arch 2 Arch London/Paris Cycle from Laurence Cameron on Vimeo.

I think Laurie has done a great job, just about the right length.

The roller-skiing has started again in ernest, which is a good thing since I’ve put on so much weight since the bike ride… Crazy given all the cycling, running and skiing I’ve done, but at least you now know why there’s a pie shortage in Southern England.

Lots of exciting things have been going on at the James Whale Fund for Kidney Cancer over the past couple of months. I’ll try and make an effort to write about them shortly, things like the nurses on-line training course and the Patient Day that’s coming up on the 17th November. Check out the web-site if you want to learn more.

Oh yeah, and here’s a pici of the new hound ….

Hands up who didn’t go Awwww Cute!!! ….. (we’ll see just how cute it remains once she’s destroyed our carpets and furniture).

Please sponsor me by clicking on either of these links VirginGiving

Posted under Andy Thomas, Arch To Arc 2011, General

This post was written by AndyThomas on August 25, 2010

Care to Cycle? ……..

I’m in a quandary. I’ve been raising money now for the James Whale Fund for Kidney Cancer over the past 3 years and I hope I’ve been reasonably successful at it, or at the very least played my part .  The Arch to Arc Cycle Ride is clearly the one thing that I can point at and call an achievement, yes it would have been nice to have had a few more riders this year however it’s the first time it’s been done and it’s been kept deliberately small this year whilst we find our feet and discover the SNAFUs with a smaller more manageable group.

The great news is for this year, we’ve hit out £20,000 target, which I think for a dozen or so people is an absolutely amazing achievement, so yet again, thanks to everyone on the team, you’ve all been brilliant! and I’m so looking forward to just getting on and doing it in a few weeks time.

It has to be said that no matter how much advice you glean from others that have run these types of events it’s still a learning experience when you do it.  It’s a bit like riding a bike really, you can be told exactly what to do and how to do it, but it still takes a while to find your balance once you get on.  I know there maybe some folks that felt it might have been best if we’d gone with a larger group.  Well, we did take that into consideration but the Fund really wanted to do this for themselves, and I can see why.  If you go with a larger group of charities you’re diluting the message you want to get across.  It does mean the growth and learning curve is going to be steep, but the net result, we hope, is that we have an event that is wholly specific to Kidney Cancer…. “from little acorns” as they say.

So what’s my quandary?  Well, it’s that steep growth curve I want to achieve.  There are two things that concern me.  One is personal:

  • How do I raise £2000/£3000  year on year? How do I go back to my friends and colleagues each year asking again and again? It’s a big ask.  Everyone has been very generous and I get a sense that people get “Giving Fatigue” … I know I do.

So what do I do?  Do I get a new set of friends? …. well that’s not terribly logical and I’m quite happy with the ones I’ve got.  However, if I can’t keep on asking for their money maybe I need to engage people in a different way and ask them to push the event harder on their own Social Networks i.e. Friends of Friends. That’s one way I guess, but I sense the message will get more and more diluted the further the degrees of separation.

I think the real answers for me are four fold

  1. I need to engage local business more than I’ve done so far and get out there and pound the streets a bit.  It’s the annual donations that will really make a difference.
  2. Look at doing little mini-events like Curry nights or maybe even mini-cycle events.  We could look at creating a James Whale Fund for Kidney Cancer Sportif around the Watford area (or Cambridge where the charity’s based)
  3. Try and engage the Social networking wizzards like JP to see if they have ideas on how you can mobilise an army of twitter & facebook friends/followers
  4. Make sure that we publicise what the charity will be using this money for and how it can help patients and their families.  I’ve often been asked that question this year, especially from those people who work in a health related profession.  I can’t tell you how important that is, there are quite a few people out there that are reticent to give because they’re not sure if the money will be used wisely.

My seconnd quandry is less personal but still relevant to the first one:

  • How do we attract up to 200 people onto this event, year on year?  What’s the hook?  What will make people choose the James Whale Fund for Kidney Cancer instead of something else?

I really don’t have any real answers to this, but plenty of ideas

  • Clearly, we’re going to have to make it good … year on year.
  • Get each of the major cycle shops (like Evans and Cyclesurgery) to put adverts up on their web-sites and in their shops
  • Advertise in the cycle trade journals
  • Write articles for one of the trade journals on this years event

However what I really want to do is to tap into the family and friends of Kidney Cancer patients.  I think this is where we could make this event a really special thing.  I love the fact that as a Kidney Cancer survivor myself I can give back by taking on this type of challenge, and there has to be more folks like me that feel the same way.  I have my health, which is the one thing I can give.  If you’re in the US or anywhere else in the world this could be a great way of tying it into a European holiday.

So to all you fellow survivors or patients, pass this message onto you nearest and dearest, and to your friends.  See if they want to come along to next year’s event.  Lets see if we can grow this event into something really special.

If anyone has good ideas or ways to push this then please let me know, I could use all the help I can get!

Please sponsor me by clicking on either of these links VirginGiving or JustGiving

Posted under Arch To Arc 2010, Arch To Arc 2011, General

This post was written by AndyThomas on May 28, 2010

Very Sad News…………

It was such sad news to hear today that Tony Clark, co-founder and Chair of Kidney Cancer Canada passed away.

I had the privilege to meet Tony last year when he and Deb Maskens spoke at the James Whale Fund patient day in London.  Their talk had a profound impact.  To see how much has been achieved by Kidney Cancer of Canada in so little time was truly awesome.

Tony, for me you had the capacity to inspire me and others. The legacy you have left will surely grow based on the foundations you’ve helped create.  You will be sorely missed.  Rest in Peace.

Posted under Andy Thomas, General

This post was written by AndyThomas on April 17, 2010

What’s been going on then?

It’s been an interesting few weeks for me since I came back from my trip from France. I dont seem to have had the chance to stand still and it looks like my days of unemployment are coming to an end (shame). I start a new job on monday as a part-time consultant/contractor. Now part-time to me means 3 days a week, but I suspect they may want a little more out of me initially, but I’m so lucky to have found a part-time position that I’m more than willing to take the rough with the smooth.

On the Arch to Arc front we’ve got another addition to the riders bringing our total up to 15 which I think is fantastic for the first year, and even better we’ve reached over 80% of our target of £20,000 which I think is absolutely amazing at this stage, so yet again a big thanks to all the riders who’ve been plugging away.  Looking at all the facebook pages and blogs training has started in earnest for most of us …. only 2 months now!! Having done it once I’m really excited about doing it again in a group, it’ll be great fun.

I’m going for a cycle with Trevor Coultart (one of the riders) this evening which should be a giggle, he’s set the course so I’m in his hands.  I seem to be raising my average speed gradually but I have to admit I’ve been playing more music and generally fiddling around at home …. I really should have being out there on the bike.

On the Kidney Cancer front it’s also been exciting times, with the election looming Cancer is getting a good press as the parties jockey for position, if you want to see some of the news and how hard the likes of Clive Stone and Rose Woodward have been working then check out this link and you can read through a selection of press items.  I received a typically patronising letter back from my current MP when I asked for help on the Afinitor issue (so I know where my votes NOT going).

It’s also worth noting that the Kidney Cancer Association (one of the Kidney Cancer groups based in the USA) are coming over this year to hold a Patient Day and the James Whale Fund welcomes them to the UK.  I would suggest you make a note in your diary if you want to attend. It will be interesting to see a different perspective and how they are dealing with this in the US.

Some exciting news is that they’ve unearthed a Kidney Cancer Urine test that potentially identifies certain proteins that can indicate the presence of Kidney Cancer, this will be a big leap forward and should mean early diagnosis is quick and simple cutting down on the number of deaths each year.  Kidney Cancer is known as a silent killer in that symptoms dont often display themselves until the later stages of the disease, and it can often be too late, if caught early enough surgery is usually all you need and this Urine test will go a long way to helping …. so bring it on!!

It’s going to be a busy summer in the world of Kidney Cancer in the UK so watch this space and the news feed on the James Whale Fund web-site to find out what’s going on.

Please sponsor me by clicking on either of these links VirginGiving or JustGiving

Posted under Andy Thomas, Arch To Arc 2010, General

This post was written by AndyThomas on April 15, 2010

Simply Red

Simply Red are going on tour for the very last time, I have got four tickets to see them at the O2. This will be on the last date of the final tour.

I was pleased to be able to get the ticket. They are a part of my past.

The last time I saw them was in May 2003 at Wembley Arena. The Home tour.

I stood in the queue with my wife, watching the world go past. I turned around and thought “where are all these old people going”.

And then the realisation, they were joining the end of the line. I was part of it.

We were all that bit older than when Simply Red were last on the road. In fact Mick mentioned the age thing and how the press had given him a hard time for not being a slim and young and beautiful creature. We didn’t care; we had grown up together and his voice…

So that was Simply Red and it was simply very good.

The next day I got up for work. Normal routine.

I went for a pee and that was when my life changed.

Simply Red…that was the colour of my pee.

I had, at one point in my life, worked in a hospital (or two) and with my great depth of experience I knew that having the toilet look like I had tipped a bottle of Chianti down it was not right.

I said nothing and did nothing. Off to work and later on I went to the toilet.

Nothing.

The clearest freshest pee you ever did see, it could have been Evian.

So, I rationalised and googled and thought well, although I had not run a marathon exercise and exertion could be the answer, I had been pretty well down with it at Wembley and I did shuffle my feet a bit and stand up almost the whole time.

No that was not really likely to be the cause.

A stone, I had renal colic once, it must be a stone that is a common cause. Oh, but no pain. A little one then, chips, that will be it.

Of course it happened again and the pattern repeated. Blood, clear, blood, clear.

I went to Coop and got a tea strainer. Yes really. I started to pee through it to see if there was a clue or two. Looking for that chip, awaiting the stone I knew was not really there. Caught a clot or two, they were tiny but I caught them.

I don’t really remember how long that went on for, not long. I drank a lake full of water to “flush out my system”. That failed as well.

I went to the doctor and explained it all, he was not too concerned and whilst some fast track was available if a nasty thing was suspected I was just routine as far as he was concerned so I awaited an appointment at the man clinic.

The day arrived and I trotted off by myself. First a chat with a doctor and then much to my surprise a cystoscopy (a look into my bladder). Now I was surprised because when I was a hospital worker this was a day case with a rigid metal tube thing and a general anaesthetic.

Oh no, not know.

A bit of local gel up the ever shrinking old chap and a flexible telescope affair. You get to see your insides on telly, so that’s OK then!

Nothing. They found nothing wrong. Back to the ancient magazines and a go with the ultra sound lady. Now these lovely and experienced professionals are not allowed to interpret or comment on what they see but the clues were there. A quick scan both kidneys and then, “can you roll onto your right side”,” just having a problem seeing the left properly”, “OK, just a little longer”.

And the capture of a still image or two.

The clues were there.

The clues are always there.

Then the wait to see the doctor again. Called into a room, too many people in here. Sit down please.

“You have a tumour on your left kidney”. “You will need an urgent CT scan”. “You will have to have the kidney removed”.

“I’ve got what? I’ve got cancer”.

“Yes” he said.

“But I’m only 42″

“This won’t kill” said a kind faced nurse.

“How do you know” I replied.

“Is there anyone with you” someone asks.

“NO”

“Would you like to sit here a while” The kind faced nurse asks.

“Will it make a difference?” There was no reply.

I sat a bit, trying to take it all in. It was burnt on my brain at that moment never to be erased. Not capable of erasure.

I drove home; I had been out of the house a few hours. In those days, with young kids around my wife had a great job which she could do from home so she was there, waiting for me.

“Hello, how did you get on?” she called down the stairs from the home office set up in the spare bedroom.

“Not too good…”

And so it started, it was not just about me and sorting this out, it touches so many people around you. Like telling the kids the holiday is cancelled because I have to have an operation and telling my Mum the news. We lost my Dad to cancer some 8 years before this.

Then there was the NHS who had a very different idea as to what urgent meant to my idea. There is too much to say on that subject, perhaps for another time. Suffice to say I was able to choose to be treated in the private system as a self pay patient. No insurance but we could find the cash.

I became a cancer patient. I went for some tests. I checked out my worth dead, but it was too late to change that. Life insurance is still a problem; thankfully I was in a good pension scheme with death benefits and had insurance already in place.

Surgery came and went; the day of the operation I had not had a single symptom for three weeks. I had never had any pain or discomfort.

I am so please I went to the GP. Had I waited it would have gone away and by the time any sign or symptom returned it could have been a very different story. It would have been very easy not to go, be a bloke about it all, but I think I always knew this was something pretty wrong. I do not exaggerate the colour of my pee.

I got back to work 10 weeks later and entered the system for routine checks, a cycle of fear and despair followed by relief.

And then after 5 years they don’t want to see you any more. Now that is full of mixed feelings. Nice to be free of the checks but what if…? How will I know?

At my last scan it was pointed out that my remaining kidney was some 30% bigger than it had been before it was all alone. So now I realise I don’t have a beer gut but an enlarged kidney pushing all my insides forward!

I get a weird cramp every so often, where you should not get cramp, just to remind me of it all. But I don’t really need reminding.

I do loads of stuff I may not have done before, a bit of the yes man syndrome. But in so many ways despite it all I have reverted to type, getting annoyed or frustrated about stuff that really does not matter.

So Simply Red at the O2 in December. I am sure it will be a great night out.

I will try not to dance about too much, just in case.

Posted under General, Peppers

This post was written by Peppers on April 7, 2010

Tags: