Kidney Cancer Bloggers We All Deserve The Right To Life. Have your Say.

Well here I am 5 months on from quite a saga in Cardiology this past January.  I had a recent followup abdominal CT scan which came back clean, and feel entitled to feel well.  I am have also had a recent blood work, which I am waiting the results on, as my last Creatinine result was from January at 114, and have no idea how I am doing now.

Apart from a bit of a dip emotionally for a few months for no particular reason, I have been fine, however that dip drove me to the Cancer Society’s Cancer Connection, where they match you with a peer who has experienced the same. That proved a good thing, as that was support just when I needed it. I was also involved in the Relay for Life here in town, and was in the Survivors Dinner, and the Survivors walk, as well as part of my company team.  I met someone who had also had their right kidney out.. and it was during the Survivors walk.. and you know how people never ask you directly about your cancer, they just know you had it and don’t really want to ask.. but this lady came straight out and asked.. and she had had the same, with some further cancer elsewhere.  But as we walked we hugged each other, and felt we had been fated to meet all our lives.. it is rare to find someone with kidney cancer, so we feel we have found a new friend in each other.

The peer I speak to has suggested that from here on I should just get an annual organ scan to make sure that it has not popped back somewhere else, so that you can get on with life in between. This lady had her right kidney out when she was pregnant 18 years ago, was told she may lost the baby, however with breaking a rib to get the kidney out, the baby, her son graduated this year.  She is an inspiration to me that I can survive.

So life goes on, and am coming up to my first anniversary of the diagnosis in August, and this past year has been quite a whirlwind, and almost feeling that I can now get on with the rest of my life.

Posted under Gemma A S.

It’s been a long while since I wrote a blog on any subject. I’ve been away in San Francisco for the last month and have started a new role in the company I work for back in the UK.  So, to be honest time has been of a premium especially when most of the team I manage is 8 hours behind me back in SF which means I end up on the phone til late in the night. Having said that I can’t complain ….. at least I have a job!!!

What’s spurred me into writing is the comments that have been flying around on the ACOR Kidney Cancer Mail list (a great resource by the way for anyone who hasn’t already come across it). The emotive subject of social medicine has reared it’s ugly head and you can see from the comments that this is a topic close to many of our hearts.

Here’s my experience (and view) for what it’s worth.

First off I think it’s my duty as a founder of The Kidney Cancer Resource to stay as un-biased as I possibly can and ensure that my personal views are not splashed across the KCR  site itself… it needs to stay as factual as possible. I’ll use this blog as a means of expressing any personal views I have. Having said that we will always help to push a cause that has clear benefit to Kidney Cancer patients, witness the struggle to get Sutent approved in the UK over the last couple of years… I like to think we helped in our own small way.

That aside, I’d like to say that my personal experience of our UK Social Medicine (i.e. the NHS) has been fantastic. I am lucky in that the company I work for helps fund any private treatment I need through health insurance, but right up to the point of my surgeon saying “We need to take you Kidney out because you may have cancer” I stayed within the NHS system…. the second she said those words I asked if I could go private.

The difference between the NHS and Private for me was how long I’d have to wait for the surgery and the fact that I got a private room and slightly better food, outside of that I got the same surgeon and team, the same oncologist and the same care. Could I have pushed along the pre-surgery tests if I’d gone private? …. definitely, however I’m not sure how much difference that would have made for me personally, they caught mine early and were debating if I needed surgery, and even if I did they couldn’t say if it was cancer or not. I always take comfort in that, despite it being an 8cm cyst/tumour they thought it wasn’t cancer right up to the point they stuck it under a microscope……. darn those microscopes.

My NHS GP was fantastic, always on hand to answer ANY questions I had, pushed to get my scan results back and generally did all he could to put my mind at ease.  So, all in all I had a good experience with social medicine, and I hate to hear it being slammed down at every opportunity. 

Yes, I had to push a little to get test results and appointments,  but I always got them.  My wife and family thought I was nuts not using the private health cover, but up until the sugery I never saw the point….lets face it, if the people diagnosing me were the same then I doubt the private tag would have made much odds, the only difference I could see was nicer waiting rooms and free tea and biscuits.

Do I think there are issues with the NHS? Oh yeah!! and some, but not the nurses and doctors and carerers, they work their behinds off to keep it all going. There are always exceptions to this, but there are exceptions in the private sector as well. Somebody I know for example has been waiting for a year to get an appointment on the NHS for a very serious condition who lives in the same district as me … go figure, because I wasn’t made to wait at all.

The sheer waste that goes on at the management level in the NHS is reprehensible. I’ll use the NPfIT (National Program for IT) as an example of this …. it is/was the largest ever IT project ever undertaken by anyone…anywhere, and yet when you talk to the local NHS trusts about it (which I have), they simply don’t see where the added value is or why they’re being forced (in many cases) to implement it. So, all that money for what? These are some of the reasons we stood up and fought to get Sutent approved, because when you hear arguments over cost and then put that side by side against the waste it simply doesn’t stack up.

I didn’t fight because I think social medicine was a bad thing, I helped with the fight to ensure it gets better and that people who don’t have the luxury of private medicine get the help they need when they need it. Funding and miss-management aren’t always a good reason for condemning something… they can be fixed.

If I was really cynical I might suggest that we rename the “The National Health Service” and call it “The National Health Service and Banking Corporation”… Gordon Brown may throw a few more random billions at it if we did that. Yeah, yeah… I know there’s more to the banking crisis than that, but I couldn’t resist a quick dig.

I can’t really comment on how things work in the US, I have no personal experience of it. As John Smith says on the ACOR list, clearly the US get quicker access to the newer drugs and there certainly seems to be more research going on… however I can only imagine that if you’re out of work and with no savings how that might leave you when you get really sick, not something I’d like to have to face.

Posted under Andy Thomas, General

First off I have to say I was heartened by what Dave deBronkart has to say on this subject. It’s made me think about why I initially setup KCR and what the motivation was for it.  However, rather than go off on too big a tangent lets deal with the main issue that I think Dave is eluding to which is “Who Will Vet The Vetters?”.

This is a tough one and I think his ideas around how to resolve this (or at least improve the situation) are valid.  I’ve had a think about these 3 ideas and also had a think about how KCR could look at implementing them:

1. Patients and clinicians should be able to write comments on Medpedia articles.   Within mediawiki (the software that runs wikipedia and KCR, and I suspect also forms the backbone of medipedia as well) it is possible to use the discussion tab on each article to enable open discussion.  The premiss on Wikipedia is that if there is a debate or disagreement on a subject it is debated in the discussion tab not on the main page.   A consensus conclusion is drawn from that discussion and those conclusions are then added onto the main page. OK, so how have we implemented this in KCR?  Slightly differently, but hopefully with the same outcome.  What we’ve decided to do is direct people to an open forum so the debate can be had there.   The issue I’m finding is that we don’t get that much discussion on articles, and I personally think this is a bad thing because there is no way I can assume that 100% of what is on KCR is accurate as people’s experiences are different.   The reason we decided to put the discussions on a forum was to keep the KCR site as factual as possible and not have it full of personal comments or political views i.e. just stick to the basics.  The idea isn’t to stifle debate and comments just to keep them within the forum and not muddy the content on KCR.  I could be persuaded to open up the discussion tabs and work in the same way as wikipedia if that’s what people would prefer.
2. Patients should be able to mark an article as being helpful or not.  I think this is a fantastic idea and I will see if there is a way in which this can be implemented on KCR.  There’s usually some add-in software knocking around that can be used.  I’ll report back.  I’ve always wanted feedback as that’s the only way we can make the site better and more relevant to the readers.  
3. Clinicians should be able to do the same and mark articles as helpful or not. I suppose the only debate on this is if this needs to be separate from the patient ratings.

Dave has also made a reasonable point on the ACOR site whilst responding to my comments. He kindly said that KCR is heading in the right direction, however he has also quite rightly put the caveat that he doesn’t know the community around KCR, and yes this raises an important point.

• How reliable is the information?

So,we’re back to “Who Vets the Vetters?” and more to the point who are these vetters?

This is where I have to be self critical and make it clear that on KCR the information is an aggregation of data that has been drawn from peoples personal research or though direct patient experience.  So, given this, the information should NOT be seen as clinical advice, but more as a means of reference giving the readers and patients a more rounded and detailed view of Kidney Cancer.

I had an interesting discussion over lunch last week where it was asserted that clinicians tend not to like sites like this. “It can confuse people and make it harder for the clinician if they have to field a mass of disinformation each time they see a patient”.  I do sympathise with this view and I can see how annoying it may be, however it fills a gap.

What’s gap?   Well one gap for me was that hideous time between visits to a specialist, and in the UK this gap can be long.  I am private now, but was on the NHS up to the point of my nephrectomy and I remember how stressed I was waiting for scan results and tests, it was the worst time of my life.  I filled that void of information by searching around the web trying to find answers for myself, some answers were good, others pointed me to non existent miracle cures.  Basically there was no one place I could go that could give me information at a level I could understand and trust.  The medical sites were too technical.  

I don’t think the clinicians could fill this gap, it would be unreasonable to expect them to be available 24 * 7 at the end of a phone to deal with every ache or twinge that a patient feels and is paranoid about.  It’s also the case that half the questions I’ve got for my specialist I either forget to ask, feel too stupid to ask or am too scared to ask at the time of the consultation, so I end up doing it on the web.  Crazy I know, but I admit it!!

I also hope that it will ultimately help the forums and lists like ACOR and KCSN.  I think they both give invaluable support, guidance and information and we’d be lost without them, and I hope that KCR can complement them by providing articles that the experts can point people at rather than having to repeat themselves when new users come on asking the same questions.  I also hope it provides a good source of aggregated news articles that relate to Kidney Cancer.

I personally believe that as you get a critical mass of contributors on sites like these  i.e. KCR and Medipedia that they start to self regulate naturally and the real value starts to emerge. I’m a great believer in social networking and I think these things are just an extension of that.  Whilst I think there is a danger that there will be some disinformation, I also believe that if you have the ability to openly debate the information as well, then the community as a whole will be able to moderate and fix it.  So for me, the community becomes the vetters, and within each community there are always people who are seen as “gurus” and I suspect that these are the folks that will float to the top of the contributors heap.

You’ll be glad to hear I’m going to bring this particular blog to a close now, as it’s too long, however there is so much more to talk about and it would be interesting to discuss how wikipedia moderates itself and how it is perceived as an information source …. maybe tomorrow.

Again, thanks to Dave deBronkart  for bringing this topic up

Posted under Andy Thomas, General

I had been due to return to work in January, after having a laparascopic nephrectomy in October.   The issue with my heart that caused the cancellation of the first operation, was due to be rescheduled for sometime in the next three months.  I had a return to work date, and then suddenly Cardiology called and was going to be done on the 20th January, which moved my return to work date to the 22nd January.

I was on the table for the Cardiac Ablation for 5 hours, and I think I had 2 or maybe all 3 of the specialists that can do this, involved in my procedure, this specialists are the only ones in Nova Scotia, possibly in the Maritimes, so I was in good hands.  They kept checking if I was doing  well, and would give you more drugs if they felt you needed them.  All three Drs came by to see me, and confirmed that it was successful, and said that if I did decide to go back to the hotel, to make sure to come back and see them in the morning for a final check. Soon after they left my heart started racing again, I asked a nurse with 33 years service if that was normal, and she said yes, that I would carry on taking my drugs for three months and then get weaned off them.  This I was unaware of.  Next morning I went to see the Dr that had requested to see me, and I had an ECG done before he arrived, and my heart was in a race.  Apparently, when they fix a tachychardia, it is fixed, no more drugs it is instant.. and if they had known they would not have allowed my discharge..

So there I was so close to going home, and my husband went home on his own while I waited for them to find me a bed in Cardiology. That took some 6 hours - however as soon as I got to my room, a Dr came by with the result of my followup scan that was done the week before, which was clear, no change on the lesions on the Right Liver, which is what I wanted to hear. The next day the additional tests started, an Echo that was called a TEE, which involved a tube down to my stomach to take a closup of the heart, and then the next day an MRI to make sure that a fuzziness around my left eye was not a clot from the Ablation.  For me, to have the brain MRI also cleared any worry about the Kidney Cancer, and possiblity of Brain Mets, every headache is not a brain tumour, and this is very true.

I then waited until Tuesday, which was the first spot in the schedule they could fit me in. They checked the groin entry points from the week before, and thought they could hear some awry, and sent me for an Ultrasound to check for Fistula or an Aneurysm, and was quite a relief that it all proved to be fine. They thought this would be a quick 3 hours, go back in and fix it properly, but I still proved a challenge, and it took then over 5 hours.  I had so much Heparin that they had difficulty gettinging the entrance points in the groin to stop bleeding. That issue meant they kept me lying down for 4 hours before being able to lift my head, and be able to eat for the first time in the day.

My husband came to collect me once they gave the heads up that they have fixed it this time.  However they were all very clear that this can come back, but for now I am drug fee, apart from the aspirin to think my blood while my heart is healing itself.

So from having a racing heart diagnozed as PSVT, to finding a kidney tumour and having that removed, and then having excellent results from my followup scans and then the MRI, and now finally getting the atrial tachychardia fixed, once my energy returns, I will feel like a new woman… truly a 100,000 mile overhall.

Posted under Gemma A S.

As I cast my mind back to March 2007 after the nephrectomy I cant help remembering what was on my mind as I surfed round the internet; you know the thing, that mad sense that “there must be a miracle out there” that somebody is hiding under a rock.

As you look at how people find there way onto KCR for example you can see that they are pretty much doing the same thing. They put a search into google and then hop onto KCR, read whatever they want and then hop off again onto the next search result.

Now you’d think that with all the information stored on KCR that there would be no need to hop off elsewhere.  Yeah, yeah I know it’s probably a tad arrogant to assume that we’ve locked down all the info available but to be honest it is safe to assume that we’ve nailed enough information to make the site “sticky”….. I’m glad to say that the regular readership is growing, however capturing the site hopers would be fantastic.

So why do they hop off?

When the decision to create KCR came in 2007 it dawned on me that the site hoping is something that people just do in desperation to find the “miracle”.  I did it, I surfed and surfed ignoring all the sites that said “there is no miracle” until I found sites that said “here it is, buy ya snake oil here!”  Instinctively I didn’t want to believe the harsher facts, I wanted to believe that there was some more comforting solution.

And there’s the danger. Yes, I’m sure it is safe to say that there are people out there who’ve had “miracle” results by standing on their head’s  sucking Goji Berry wine through a shark’s cartilage straw that’s been soaked in esiac tea strained through apricot kernels. However the reality is that many of these have no medical backing or efficacy and are massive hearsay outlier examples, it’s just a cruel way of extracting money from people when fear gets the better of them.

I’d love to work towards putting a stop to these snake oil salespeople.  The challenge on KCR is to bring all these supposed cures onto the website so they are listed and well understood, giving people a genuine reference.  Having said that, giving these cures any space on any site can often just advertise them even more …. And this is where we need a balance.

One of the reasons I’ve asked for Feedback for KCR on the new Kidney Cancer Support Network forum is to see how other folks believe we should deal with this kind of data, how’s it best displayed? How do we keep it up to date?  Yes, I’ve been given the FDA’s list of known fake cures, but there’s more out there and we need better explanations.

Posted under Andy Thomas, General

It’s been quite a while since I wrote my last blog, but to be frank there hasn’t been that much to shout  about, and with this wretched credit crunch my mind has been somewhat focused elsewhere.

So whilst we’re all sitting here at work waiting to see if we have jobs at the end of the week or not I thought I’d put my fingers to the keyboard and see what comes out.

Out of this financial gloom something exciting has happened in the last week.  As of now there is a fully blown Kidney Cancer Support Network web-site which includes a large map of the UK showing us where people are, plus there’s a new forum to bring people together and where we can share our experiences and views.

Since the James Whale Fund closed their forum down there hasn’t really been anywhere to go that’s genuinely active and patient lead, but I was so heartened to see that they’ve put so much effort into making Rose’s dream a reality.

What we have now are groups working cooperatively, with the James Whale Fund, the Kidney Cancer Support Network and the Kidney Cancer Resource all helping each other and all focusing on different core areas.  Those core areas being Funding and Awareness, Patient Support, and finally, Information provision.

I do believe that since the N.I.C.E. demonstration back in the Autumn of last year there has been a change, it showed that people coming together like that can make a difference.  Thanks has to go to Clive and Jan Stone for making this happen.

Clearly I’ll be putting up a more formal announcement on KCR to celebrate the opening of the Kidney Cancer Support Network.

I’m looking forward to the coming months and seeing this all come together. 

Nice one Rose and lets hope that the NICE decision on Wednesday of this week is the one we’ve all been waiting for.

Posted under Andy Thomas, General

I have finally relented to the new blog format… you have me… I cant go through life without my usual rants!! so here goes.

Christmas was quiet, presents were few but life is good!! I have a plan for the new year to make the rotting apple in my brain go away and give me a chance to move forward so I am getting together a small committee of cancer patients from Haywood House Day care centre and we are going to change the way patients at the City Hospital in Nottingham are given the news they have terminal cancer and make sure that the staff at the hospital do it in a prepared way.  Its become apparent to me talking to others that I am not the only one who has “slipped through the cracks” when it comes to being treated in a humane way so if we can change the way this news is delivered to patients in our own hospital we could create a proforma for all hospitals in the future. I feel so strongly that patients should not be left for weeks with this terrifying news with nowhere at hand or no-one at hand to help them in the first few weeks.  It is not good enough to just leave them adrift looking for their own information. So.. this is my plan..I know some hospitals already do this preparation and have a good standard of communication but they are few and far between and I feel it should be of a good standard in EVERY hospital!!!.  But we will start small with our own hospital first then move on.

Let me know if you have any good ideas to help build a template for a standard document that can be the starting point for the way patients should be told of their limited future. If anyone knows how a cancer patient feels they should be helped through this difficult period in their illness it is patients who have already had to deal with it. I personally cannot come to terms with how I was treated and I feel the only way forward for me is to change the system to incorporate more communication tools and to be handled with a little more compassion.

Posted under Lizzyd57

Try Googling the above Lizzy and you will get loads of info. Also there is a policy called the Liverpool Care Pathway which is an end of life policy and I think gives some guidance. As always  with the NHS tere are lots of policies about everything  but getting them translated into actions is another thing.

This is a good site with an outline of what is being taught and what is MEANT to be happening when patients are given bad news…. I leave the expletives to you – we all know this is not happening everywhere – go get ‘em Lizzy.  

http://www.breakingbadnews.co.uk/

site made possible by Pfizer  ( coincidentally manufacturers of Sutent)

Health Professionals find it difficult to break bad news since it means telling an individual something that they do not wish to hear. They may have had little opportunity to learn the skills required and may feel ill prepared to deal with the patient’s reactions, which can include anger, guilt, and blame of the bearer of the news

Loads more content here Lizzy……………………..

http://www.connected.nhs.uk/index.php?option=com_content&view=article&id=9&Itemid=14

Hope this helps Lizzy. In case you are wondering where all this comes from….. My Cancer Group down in Cornwall has a couple of patients who sit on an end of life/breaking bad news Group so they  tell us what is going on

 You take care Lizzy, Love  from  Rose W xx

Posted under Uncategorized

Well , I’m not sure what happened to the bit of  explanation  I wrote to go with my Porthtowan photo, but wherever it is - it isn’t here on the page with the photo !! Must try harder.

What I tried to say when I put the photo up was that this morning’s sky should never have happened. My little house looks out over the beach facing north west - ergo - the sunrises in the East so why did Mother Nature decide to put the sunrise colours in the sunset place? Why did we get the most wonderful sunrise colours in the early morning at 8 am  in the north west??  My logic tells me it  is something to do with refracted light or some such explanation , but I much prefer the romantic explanation; that it’s a new way of looking at things?? start of a new year and all that!

I was so pleased to see Lizzy on the blog this morning, just when I had decided that I must try to do it more often - because there is so much going on and sometimes you just want to get it off your chest. 

The new support website should be going live soon - I hope people will find it fills a hole - everyone says that they want to get together and  help other patients - again such co-incidence that Lizzy should also say this… Jane  has also said it in her blog - so when the site goes live it will be great to see people able to find others who live close by to find friendship and  just to be able to talk freely to someone else who understands the never-ending roller coaster that you are on once you have been diagnosed with KC.

I am so fortunate, the world could have been so different had it not been for one super conscientious radiographer who decided to look a little more closely at a scan. What made her look at an area that wasn’t even being scanned? I do not know, but I am sure glad she did .  and here I am 5 years later, minus a kidney, adrenals and a rib or two  but still very much alive and kicking, some night say too much kicking !!

I’m  being bullied by the  dogs now  so it’s off up the cliffs for a dog walk now - its very cold here - time to break out the ear muffs!

Rose W

Posted under Uncategorized

early morning - this is what I woke up to this morning !!!

Posted under Rose Woodward