Feelings in Yo-Yo!

I am sure that all this is familiar to everyone who has been diagnozed with Cancer of any kind.. this good day-bad day yo-yo! 

Last Saturday, while having our first Sunday Roast of the weekend, Jerry was a little overwhelmed with all he is feeling about our situation. We turned that around by thinking of Dr Lawen’s positive comments on my case.. so that Sunday, we had a good day.  Monday, unfortunately due to a comment made in good faith on this blog, I panicked and got very upset, which took me back to my GP, to talk over my situation, my health background, my symptoms (none), and what is planned for me.  He told me that my Chest X-ray is clear, which is more good news.   He then proceeded to tell me that every case is different, that everyone’s background, and symptoms are different, that I have to take things stage by stage. However he has said that he will make sure that my Pathology results will get seen by an Oncologist, and that we will get Dr Lawen to check out the mark on the Liver during surgery if at all possible, and take a biopsy.

So Tuesday was an uneventful day, and life seemed normal. Then to today, Jerry was very subdued, wasn’t even reading this morning, and quite unresponsive when I talked to him. So I just started feeling that I really need him to be ok for me, basically I need him to be strong for me.  When he took me to work, I was already a bit choked about that, and then the road was blocked right by work, and then the divertion was not marked, and there just didn’t seem to be a way in to the site, and so that was the ‘straw’ that set the flood gates off this morning. So I walked the last stretch to work across the parking lot with the tears rolling down my face, and knowing that I was totally over reacting to the situation.

A friend suggested that since sometimes music sets me off, and now this, that maybe I should go on anti-depressants, but don’t feel that I have got to that point yet.

I don’t think it helps that neither of us is really sleeping that well, so that we find we are not refreshed when it comes to morning.  As far as Jerry is concerned, he had wanted to speak to his Mum on the weekend, but for some reason he only got to speak to his step dad, and his Mum is the one person I think he feels he can talk to about how he is feeling.

I know this blog is all about me, and probably seeming to be totally selfish, but at this point in time I feel entitled to be selfish, and to be totally thinking about what is happening to me.  I have read other blogs by Kidney Cancer patients or carers, and they are inspriring, and there to guide other people through what they may face during their treatment. I like to think that down the road that my blog will be more like that, and will be of help to other KC sufferers.

And Comments are still most welcome, I would like to think that the blog is read by others.

Posted under Gemma A S.

This post was written by Gemma A.S. on September 24, 2008

How our life together is changing!

Today showed me that my diagnosis has changed the way we are together. Life here in Canada has meant we were back going out to work, and college, quite the reverse from our time in France when we worked side by side every day.  So this morning we worked together stacking our wood delivery, that is preparing us for winter. We now make more of an effort that both of us take the dogs for a walk. We eat at the table to eat together more and more.  We both love reading, but now we will stop to talk at any point, prior to this, if we were reading, we didn’t tend to disturb each other.

Jerry has been fine about all this, very positive, and helping me cope with what is ahead of me.  But today over our first Sunday lunch of the weekend (this is Saturday), he was looking at the our framed photos of two black cats (brothers) that we had when we were first set up home together. We talked about Ziggy and Spider when we first saw them, Spider climing curtains, and Ziggy drinking the remains of a cup of tea. I could tell he was getting emotional, so I asked if he was ok.. and he said I know I put on a brave front, but all this really frightens me.  So of course that upset me, because it allowed me to say how frightened I was too.

The conversation got veered back to the consult with Dr Lawen, who as abrupt as he was, said that it was what it was, it’s there, it’s a tumor,  it’s got to come out, end of story.. I can’t make up other bad news for you, you are among the 95% who have the kidney out, and that is the last of it – apart from the regular scans. So that turned things around again to a positive frame of mind.

I find myself putting on a very positive front at work, and everyone says that I am being very brave, and that I will be fine.  It is usually when I am in the truck driving on my own, with the radio on, and an old meaningful song comes on, and the tears roll down my face. I get to thinking that I don’t want it to be over yet.  And of course next year I will look back at my earlier posts, and think what the heck was I think writing that.

I am thinking of going back to see my GP this week, I think a chat with him will get me back on track.  I am finding it hard to concentrate at work, at the same time trying to tie up loose ends, so that my manager knows where I am with things.  My job is to getting our site to ISO 9001:2000 registration, and I audit every month to assess where were are getting to that goal.  So now I have to prepare one last audit before I leave, which for me will give them a clear picture of where the gaps are, and what they need to work on.  So although I know what needs to be done, I find that a whole day will go by, and I really have not achieved anything.  My day almost begins when Jerry and I get home, and we take the dogs for their walk together. Discuss the day, and our evening meal.  This part feels real, because this is what is important. 

We are going to Toronto for Thanksgiving Oct 10-13th to my sister, and for my sister’s sake trying to get enthusiastic about it. Before all this happened, I was very exited about going. All the Candian family together in Toronto.  Now I am focused on my op date, and it is 4 weeks away. When I mentioned to my sister that it is still 4 weeks away, she said you have Thanksgiving first, worry about that after.  Maybe those were not her exact words, but it felt like my count down was not important.   I worry whether I should have not even asked the Dr for this delay.. it would still only be 2 weeks earlier, but you worry about whether that will be the ultimate difference down the road.  This really is turning into a doom and gloom post. 

To add to that doom and gloom, companies here in Canada to not pay sick pay. You go on Leave of Absence and you get sick pay from the government, which is 55% of your pay for 15 weeks.  Jerry has only just started his job, and it is quite low paid, but with him working we thought this would straighten us out financially. Of course now it will be my turn to be barely bringing in any money, and you can’t help worrying. 

So there is a lot to think about, and all we can do is be supportive to each other, we have not been together 15 years to let all this beat us.

Posted under Gemma A S.

This post was written by Gemma A.S. on September 21, 2008

Surgery Date is Set!

I got the call today, and surgery is set for 20th October.  The Hospital will telephone me with the time I need to be there. 

They faxed through a medical note (on the Urologists Letterhead) to Human Resources, stating that recovery is expected to be 8-12 weeks.  I am assuming the 12 weeks is if becomes a radical nephrectomy, as opposed to laparascopic nephrectomy.

I now have to get on with life until then, including visiting my sister in Toronto for Thanksgiving.. we are leaving 10th October and returning on the Monday 13th October.  I want to look forward to the trip, and try not to have this overpowering everything I do. It is just over 2 weeks since I was initially told what they suspected, and 4 days since it was confirmed.. I suppose this must be normal to still be dwelling on it.

I also received a huge envelope of booklets from the Canadian Cancer Society, which I have not had a chance to browse through yet.

In discussing this with Jerry, we will no doubt go down to Halifax on the Sunday, and stay over in the Point Pleasant Lodge, which is just over the road from the Hospital, and has special rates for family and patients.  Then we are there ready for the Monday, ready for what we have to face.

We have a real issue with the fact that any time off Jerry has, he will not be earning, and I will be on Medical leave, which I will have to wait at least 2 weeks for any money to come through, maybe longer.  Of course any journeys Jerry makes to Halifax in a Truck that guzzles the gas (petrol) almost eats up any money he will earn in order to drive back and forth.  So a catch-22 situation.

Posted under Gemma A S.

This post was written by Gemma A.S. on September 17, 2008

The Debate Hits Any Questions On Radio 4 Today………

I’ve managed to record the salient bit of the program today for those of you who missed it, clearly you can still get it on BBC iPlayer over the next week however I thought I’d take a recording anyway.

Radio 4 Any Questions

Sorry for some of the background noise, but the quality should be good

The action we all took by demonstrating at NICE has clearly hit the sweet spot and at last it’s in the public domain. Do I agree with what the panelists were talking about? … Difficult to say really. I like the idea of co-payment, I like the idea that people (like myself) who can afford to pay for a visit to the GP should pay for example. I can however see the other side of the argument that Tony Ben was alluding to i.e. that this could be the thin end of the wedge and suddenly we’d be sliding down the slippery slope of means testing… where should we draw the lines?

For me it should be judged on a case by case basis, we’re not talking here of a bit of flu or an infection that requires a few antibiotics. I think that this is where the problem lies, all these conversations are trying to generalise it. How can you? It would make more sense to yes, make people pay for prescriptions and GP visits, it’s pretty easy to asses, we seem very able to do that for things such as income support …. wouldn’t that be the best and simplest dividing line?  Why make it complicated?

Anyway, I’ve got no wish to upset anyone with my views as they’re not based on anything other than my thought process’ after listening to the debate today.  I do however think, as I said in my last blog, that these are hard arguments to come back on… but I’m sure we can do it.

Posted under Andy Thomas

This post was written by AndyThomas on September 13, 2008

The aftermath of meeting the Urologist!

Where do I start? He did not introduce himself, but I had found him on the Dalahousie website, and there was a photo fo him, so I knew what he looked like.  He assumed that the people in front of him were the ones related to the paperwork – I presume.  He said he was going to check the scans, and I asked if I could come too, that I needed it to be real, confirmed, and he said he would bring them back to show me.  My Right Kidney is small, and the tumor is almost bigger than the rest of it, and he said if you had to choose this would be the one to remove. The left kidney is picture perfect, just like in all the anatomy pictures, and large in comparison. He was very short shrift, it’s a tumor, it’s got to come out, we will do it laprascopically, and then you can get on with life.

I pretty much forgot my list of questions.. Doh! I did ask if it was Cancer - he said there was very little doubt. I asked about the mark on the liver, he circled the word ‘hemangioma’.. I asked would he be checking, and he said no not at this time. I asked was it likely to be related – he said highly unlikely. He said the regular scans will pick up on it if it is something to be concerned about. He actually asked did I want bad news.. he said I was among the 95% that have the kidney out and that is the end of it.  But it was like pulling teeth, the whole process. I asked did I need to see the Oncologist, and he said ‘what so that they can tell you it has to come out too’.   I asked how long it was likely to have been there, and he said they normally grow about 1cm a year, so possibly 4 years, which is while we were still in France. I asked what would I need to do afterwards in terms of meds, and he said I wouldn’t need any. He does want me to have a chest X-ray so he can see the to half of the lungs, and I will go get that done on Monday.

He said he wanted me in for the op in a few weeks time, and then I asked will I be able to go to Toronto for Thanksgiving, and he was nodding no.. so then I said my sister asked if you can do this after, and he said yes of course, enjoy Thanksgiving and we will see you straight after. Then I was worried and kept asking was he sure, and he said positive, a few weeks will make no difference.

So one of his specialties is laprascopic surgery, and he said he would only do radical if they couldn’t get a kidney out, or if they nicked a vein and needed to stop the bleeding.  I asked how long I would stay in, and if he can do it this way a couple of days, and the recovery time is ‘not long’.. so I do not know what that means.. ‘not long’.

Jerry was touching my arm for us to leave the room, the Dr was stood up ready to leave the room.. and I wasn’t done yet.. and my list of questions was still there, but leave we did.  After I was cross for the next hour of the journey home, because I didn’t get anything from him to give to Human Resources at work.  But I know I have time to get that sent to me.

So the consult was not what I expected, and guess what – I do not have oedema, I have 20 pounds of something else.. might just be age catching up with me. He did make a joke that maybe I would lose 20 pounds when he removed the kidney.  At least now I have a focus for the next month, a diet, haven’t needed one of them in about 7 years if not longer. So all this complaining about oedema to my GP, and the heart specialist got me to this guy, who agrees with the others, you do not have oedema –  but the complaining found this, so one has to be grateful for that.

Posted under Gemma A S.

This post was written by Gemma A.S. on September 13, 2008

2008 August 13 15:02:35 BST Hunting Drug Data World Wide!

Hi all – I’ve just received the message from a friend in South Africa – I thought it would interest you all:

Subject: NICE

Hi Greg,

We may have trouble in South Africa, but at least we don’t have NICE. My sympathies to all kidney cancer patients in the UK. Sometimes I pretend I’m not a Brit!!

==========================================

I have spent most of this afternoon tracking down lists of Countries in the third world where Sutent, Nexavar, Torisel & Avastin. Trying to get details from Pfizer was staggeringly difficult & the switchboard was almost obstructive but the music wasn’t too bad as one waited for yet another staff member on a voice mail! Eventually they promised to send me the details by eMail by 5.30 – it is gone 18.00hrs. and no eMail!

Bayer were difficult but not really their fault as they pull out all plugs at 5pm. So I rang Bayer Germany who were great, switchboard and each person I spoke to was at least bilingual and did all they could to help, eventually I was given the direct line of their international marketing director in the USA & he was very VERY helpfull and has provided help and loads more in the future!

I’ll have to try Avastin & Torisel tomorrow.

Any help would be appreciated. The ‘YOURS’ story/coverage is doing well and thanks to those who have sent photos any more would still be welcome.

Regards, Greg L-W.

Posted under Avastin, Greg Lance-Watkins, Nexavar, Sutent, Torisel

This post was written by Greg Lance-Watkins on September 13, 2008

2008 January 12 22:48:52 GMT intro!

Hi,

this is a great new facility making using this web site far easier for the bloggers and would be bloggers on the site.

I just never seem to find the hours in the day for the commitment to a blog, with an incoming L_O_A_D of eMails a day endless phone calls, a number of Forums and loading info on web sites – the time for blogging seems never to materialise.

That said: One never knows what the future will bring.

Most of the details and contact data for me can be accessed at : User: Greg L-W. where you can also follow links for more information to info such as Greg L-W. – Medical Cancer Diary

IF YOU have any problems operating the site do give me a shout though if it is VERY technical you need Andy! Me TechNoCrass!

I look forward to reading your blogs.

Greg

Posted under Greg Lance-Watkins

This post was written by Greg Lance-Watkins on September 13, 2008

A New Angle From NICE and Bureaucracy Gone Mad?…..

The debate has moved on, and yet again we see NICE using a new line of defence. They’ve clearly lost the clinical efficacy debate and that has been born out by ITV’s breakfast programme this morning and the numerous articles in the press this week (check out the rolling news in KCR). So, now the argument is that the NHS simply does not have the money to pay for the new drugs as they come on-line. I think the figures they are quoting say it will cost about half the annual NHS budget to keep cancer patients alive, anyway something like that.

This is a tough one and I hope we can come up with a response. The hardest thing I’ve found when discussing this subject with anyone outside of the Kidney Cancer domain is that they have a view that was much the same as mine was prior to getting the disease. That view was that “there must be a finite amount of cash available and to that extent tough decisions have to be made”. What I’ve also found is that if you try to broaden the debate and suggest ways of saving money elsewhere then you’re accused of over simplifying it or “getting off message”, it’s a catch 22.

We all know that there is a £1.75bln surplus in the NHS, we know that agencies such as NICE spend £4.5ml a year on the media etc, and yet obvious saving like this are seen as a distraction and nothing to do with the topic in hand. One of the examples I have from an IT perspective is this….. as part of setting up KCR we went through every PCT and hospital in the country and listed them in the index, address’ and website address’. I can’t remember exactly how many there were but it soon struck me as I was doing it that each of them had their own individual web presence. Apart from the sheer frustration of having to manually enter individual Web-Site address’ it just struck me that what an incredible waste of money this was, each PCT paying for it’s own individual web development. Who let them do this? Who made the decision to allow them to decentralise this? Total madness.  Madness not just because of the costs, but it’s made it more and more complicated to get information. One site with a list of all the PCTs with corresponding information, that’s all that was needed.

It’s these kind of chaotic decisions that’s making it tough for the NHS to afford real treatments.  Only about a year ago a program on BBC2 exposed just how much has been wasted on a centralised patient record system that nobody at the grass roots of the NHS felt was necessary.  Nobody even asked the users (i.e. people within the NHS) what problem they were trying to solve, they just made assumptions and went off and spent billions over many years on a system that nobody wants and has yet to even go on line from what I understand (could be wrong on that).

It’s bureaucracy gone mad as usual.  Each of these items taken on face value would not pay for the Cancer drugs, however it would not be beyond the bounds of possibility to think that collectively they could.  

The problem is we’re not allowed to talk about these things and we’re told we don’t understand the mechanics and we’re are making broad assertions …. “leave it to the experts”.  

The sad thing for me is that my observation says it has less to do with politics and more to do with the complete overload of institutes, organisations and committees etc, all playing and making decisions in similar spaces in the NHS creating blurred lines of responsibilities between each of them.  These blurred lines now mean that nobody has real ownership of the problem because they can all point to each other and say “nothing to do with me …. it’s them”.  I don’t know, maybe that’s the political aspect, maybe they were set up deliberately to confuse.  

However I’m not that cynical, I have faith in human nature; I just think they were setup with all the best intentions, and when one aspect hasn’t worked, rather than try and fix the problem at the root they just setup another layer. So this is why we’re stuck with such a huge management layer within the NHS.

I don’t know how we tackle these issues, they’re big and far from focussed.  Anyone got any ideas?

Posted under Andy Thomas, General

This post was written by AndyThomas on September 11, 2008

And the next drug comes along -Afinitor(aka Everolimus/RAD001)

How many times have I said to people at the PCT’s and asorted Medicines Managers and Health Economics bods that one of the reasons why patients want every single extra day of life that is available to them by being able to get their hands on new drugs, is that you never know what is round the corner – how true that is with Kidney Cancer ….. we know all about Everolimus from it’s clinical trials which have had good results but now the F D A in the States are going to fast track the drug – it will be marketed as Afinitor. This article has just been released in the Pharma Times …………………..

The Swiss drugmaker notes that the drug, which is also known as RAD001 and will be marketed as Afinitor, has been granted priority review by the US Food and Drug Administration, based on the drug’s potential to become the first therapy to demonstrate significant benefit in patients with advanced kidney cancer after failure of standard treatment. Fast-track status is granted to therapies that could potentially fill a currently unmet medical need and accelerates the standard review timing from ten to six months.

Novartis has also filed marketing authorisation applications for RAD001 with the European Medicines Agency and the Swiss Agency for Therapeutic Products. The submissions are based on data from the RECORD-1 trial presented in May at the American Society of Clinical Oncology meeting which show that after failure of standard treatment in patients with advanced kidney cancer, RAD001 more than doubled time without tumour growth and reduced the risk of disease progression by 70%.

Alessandro Riva, global head of development at Novartis Oncology, said that “currently, patients with advanced kidney cancer who have experienced treatment failure with standard therapies have limited options.” He added that “the priority review designation for RAD001 brings us one step closer to offering these patients a promising new therapy”.

Everolimus is a once-daily, oral therapy that inhibits the mTOR protein, which plays a key role in regulating tumour cell division and the growth of blood vessels in cancer cells. Novartis believes that the compound also has the potential to benefit patients with a variety of cancers, including neuroendocrine, breast, gastric and lung.

So thats yet another reason why these newly emrging drugs MUST be funded by the NHS.

When will these poeple listen to the Researchers and the Clinicians and the Patients?

Posted under Afinitor(aka Everolimus/RAD001), Cancer Drugs, Rose Woodward

This post was written by Rose Woodward on September 9, 2008

That Was a Long Weekend….

I’d forgotten just how geeky and nerdy I can get. I’m a bit like a dog with a bone when it comes to computers. It’s not that I’m any great whizz kid at them I think it’s just that I can’t stand to let them beat me. That’s how it felt this weekend getting this blog site up and running…. boy did I learn a lot, and thanks to Rose for all the input and ideas. Not content with doing that I also stupidly upgraded the WIKI software on the Kidney Cancer Resource site as well on Friday night, one day I’ll learn. I think my wife’s still speaking to me … not sure, I’ll have to test the water later. Wish me luck!!

Anyway, I hope it adds value to our Kidney Cancer community, and feedback is always welcome. I can’t promise to fix everything but I’ll do my best as and when I get a spare few mins.

I’ve been so heartened over the last few weeks as we led up to the demonstration on the 27th August to see how everyone has pulled together to make things happen. It just takes one spark from someone like Clive Stone and it all seems to have snowballed. I think that’s what really spurred me into action to create a communal blog space, I’d been thinking about it before because of the feedback I’d been getting on the Kidney Cancer Resource, but to be honest I’d put it to one side.

I was also amazed by the crew over in the US on the ACOR list, they really helped push the message on NICE as well by writing en-mass. Not sure why I was amazed, I shouldn’t have been because I know that community is so strong. I’ve added Manuel Lopez’s blog (“Our Life With Kidney Cancer”) to the blogroll on the left hand menu bar, some of you may want to read his diary, and he was key in helping push the message in the US. As and when we come across related blogs I’ll add them in, just let me know.

Let’s hope we can keep going to get these cruel people at NICE to change their minds, and lets also hope and pray that the PCTs start changing their attitude to exceptional circumstances, I think it’s appalling that they seem to be closing ranks.

I know Clive has some ideas brewing, and for those who haven’t already see it, check out his latest call to arms:

NICE PROTEST – KEEPING UP MOMENTUM

First of all a big thank you to all who came to London on 27th August. I am aware that many of you had travelled long distances at some considerable cost to yourselves and it was greatly appreciated. It was particularly good to meet so many new friends, and to have the valued support of those of you who are already taking Sutent.

It was a great turnout and a very special occasion, and demonstrated to all just how determined to get this cruel NICE decision reversed.

We had terrific media coverage and their interest in our cause continues as they still have an appetite for more. They have been pressing me for news of our next event as they have identified that we have touched a nerve with the great British public.

I am resolved to fight this until we win, and I am asking you all to please join me again as we must now regroup and consider our next little trip to London which must be even more remarkable than the first!

1. We now need to quickly build a database of supporters for future events. Therefore, if you want to become involved can I please ask you to contact Jan at: janstone50@hotmail.com with your name and contact details so that we may contact people.

2. The James Whale Fund have agreed to put on their website, (www.jameswhalefund.org), our t-shirt “front” and “back” logos. I would suggest that you then buy plain white t-shirts and have the design printed locally. This would then avoid having to distribute campaign material, as we are just not set up for this.

3. We could also consider wearing our t-shirts on the same day each week, say on a Saturday, as we go about our normal daily routines. This would gradually become noticed, and increase awareness all around the country.

WE ALL DESERVE THE RIGHT TO LIFE!
Clive Stone
Justice for Kidney Cancer Patients

Hopefully the next event will be the one that tips them over the edge and forces them to do the right thing.

Right, I’m off to bed!

Posted under Andy Thomas, General, Oxford Support Group Demonstration 27-Aug-08

This post was written by AndyThomas on September 8, 2008