Sunday, 31 August 2008

"I scared she".........

Cat 'navigating'

James, Cessi and Edward

Our Gulet

Me scaring the fish !


........that was Cessi's (in between James and Edward in above pic) opinion of Catherine after having spent a week watching her fighting and wrestling and standing up for herself with her much bigger brothers.  I know what you mean Cessi - if I was a bloke I would be 'scared she' too - but we ALL know you fancied her really !!

We arrived in Fethiye late in the evening when it was dark, but we could still see what a pretty little harbour it was.  Our gulet was docked right at the end of the jetty - along side dozens of others !

We were shown into our cabins, small but functional - very small actually for 2 big adults to share, Catherine was alright having one to herself but James and Edward struggled - and then we went on deck to have dinner and meet the people we would be spending the next week with.

There were 2 couples - Les and Margaret (Les is a retired DCI so as you can imagine Martin and he spent many a happy hour taking about the 'old days')  Roger and Mary (both teachers and with infinite patience with the kids) and another family - Tracey and Mark and their children Jake (15) and Gabriella (13).  And sitting down to dinner with them that night it was apparent we had really struck lucky with this company - they were all lovely and friendly with a great sense of humour.

It was hot that first night, very hot in fact so everyone (except me) decided to sleep on deck under the stars.  It was a lovely idea but for me being in the 2nd week of Sutent a toilet close at hand was more important !

There were 4 members in the crew - the Captain (and owner of the boat) who spoke excellentEnglish but flitted on and off the boat throughout the trip - it seems he has 5 other boats he was keeping an eye on - Cessi who was the second in command, again with excellent English and a great sense of fun - Mehmet, no English but so sweet and helpful, he was in charge of the dinghey - and the cook, definitely the strong and silent type but his food was simply wonderful.

So that was the complete cast list for the next week and early next morning straight after breakfast we set sail - or rather chugged out of the harbour as there wasnt enough wind for the sails !

It has to be the most relaxing thing on earth - lying on deck sunbathing, a gentle sea breeze ruffling your hair and sailing past the most spectacular scenery, the Turkish coast.  Its quite rugged and not really as I imagined it.  Thick pine forests running down almost into the sea itself, very few beaches, but lots of little bays and coves and it was in one of these we anchored for the morning.  The sea was turquoise and crystal clear, full of fish and sea urchins and tiny hermit crabs.


Very soon we were all swimming and snorkling and canoeing and exploring the little cove.  Until the bell rang for lunch.

The food was really good - goodness how the cook managed to prepare it all in that tiny kitchen.  Breakfast was bread and cheese and ham and honey and jam and usually a boiled egg.  Lunch was salad and rice and usually a vegetable casserole and dinner was salad and rice and either chicken or fish - but always cooked in a different way.  And a big platter of fruit for dessert.  Simple, healthy and very tasty and after a days swimming we were all ravenous.  The children were happily tucking into food they would have turned their noses up at home - typical !

We all soon settled into a pattern of sailing to a new cove in the morning, and then to another after lunch where we would stay for the night.  The days were very hot - over 36 degrees - and when the air conditioning came on in the evenings we all dived to our cabins for a bit of relief !  Still everyone, except me, slept on deck at night.

The one thing that surprised us all was the number of gulets sailing around that area of the Turkish coast - we must have seen hundreds !  Most of them were just day trips and disappeared late evening leaving just a few of us to spend the night out there.  We also saw a few very nice, very big, and VERY expensive boats - Ive put one on my Christmas list but Im not holding out any hope !

On Friday we stepped on dry land again, a little shakily, and visited Govek which is a pretty little town with some really nice shops.  We spent an afternoon wandering round there in the blistering heat (38 that day) and Catherine and I did some shopping, mainly pretty little pots and jewellrey.  Turkey is one of the main countries to buy fake goods and we saw loads of Gucci and Prada handbags for about 10 quid !


The first few days simply flew by and by the weekend we were due to make the long sail in open sea to Marmaris.  The Captain has rejoined the gulet by then to take charge as this involves going out into open sea and needs a very experienced hand at the wheel.  We started off at 5.30am but after an hour had to turn back as the sea was just too rough - and it sure was.  The boat was lurching around and Martin had turned a lovely shade of pea green.  So we headed back to another little sheltered bay to wait for the sea to settle a bit.

The next morning it was much calmer and after yet another early start, I think its the first time ever James has been up before the dawn 2 days in a row, we made the 3 hour long sail to Marmaris.  On the way we stopped off at the Turkish mud baths which James and Edward couldnt resist.

And so finally to Marmaris where our holiday was due to finish.  The harbour there is HUGE and was packed with gulets and yachts and boats of every description.  The town is big too and very busy - much busierthan I expected - it was quite a culture shock after our peaceful week sailing.

After a final dinner on board we tried to sleep ready for our very early pick up for the airport - 5am - yes, thats 3 days in a row James was up before dawn !  Sleep was fairly impossible though, the noise from the town and the heat kept us all awake most of the night so we were all a bit groggy as we left in the morning.

All in all this was definitely one of the best family holidays we have had - the kids had a whale of a time and behaved themselves beautifully - the company was perfect - the gorgeous Turkish coastline and sea was our playground - and to top it off I caught a fish !!

(Although I felt really well all week and managed to do everything Ive just noticed you can clearly see the tumour under my right arm pit in this picture - its no bigger but its no smaller either)





Wednesday, 27 August 2008

NICE demonstration 27/8/2008

It was a pretty early start for Catherine and I.  We had to be in Oxford to meet the coach that would be taking us, along with about 30 other protesters, to London at 9.30am  Fortunately for once the M42 and M40 were clear and we zipped down there and arrived at the meeting place nice and early.

Several people were already there, including members of the local press, and we were soon swept up in having photos taken and being interviewed.  It was a most peculiar feeling to be honest.  I did an interview for Radio Oxford (I have no idea if it was aired !)

Our numbers soon swelled to about 30 and I met up with other patients I 'knew' from the KCUK forum - this was lovely, to actually meet other patients who were going through the same experience.  It was easy to spot those of us who were taking Sutent by the white eyebrows !

A couple of photographers and a reporter came with us on the coach for the journey down to Holborn where NICE headquarters are.

We piled off the coach almost straight outside the building and met up with others who had made their own way there - there were over 70 of us protesters by this time - patients, relatives and supporters.

We all trooped over to the steps of the building, a big glass fronted affair, and positioned ourselves in front of it.  Most wearing T shirts, all waving posters - and on a very busy high street which caused much interest from passing motorists with lots of tooting of horns and waving and shouting.

Then James Whale arrived - complete with a positive throng of press and within minutes cameras were snapping, films were rolling and reporters were interviewing the patients there.  Catherine, who had been an absolutely star all day, was interviewed by a reporter from The Guardian - I didnt really hear what she was saying but it ended with her in tears after being asked to describe what it was like to have a Mum with kidney cancer.  Bless her, it was a very emotional day all round.

James addressed us and we decided to enter the offices and see if anyone from NICE was prepared to come down and answer our questions - so we stormed the lobby !  Only to be met by 3 security men and 2 policemen.  We waited around for a bit but it was obvious no one was brave enough to come and face us.

So the protest slowly broke up after a couple of hours - but we had made our point in a very loud voice.  There was much media interest and the support from the public down there was fantastic - we even had people coming out of NICE's offices on their lunch break saying how much they sympathised with our cause.

I felt so proud to be there - to be representing the patients unable to get funding for these 4 drugs - to be representing the many too ill to travel down and protest themselves.

On the way home we decided this was only the beginning - Westminster next !



Tuesday, 26 August 2008

Waving the banner.....

Im back after a fabulous week sailing round Turkey....but more of that another time.

There are more pressing and important issues right now.  Tomorrow Catherine and I are taking part in a demonstration outside NICE's headquarters in London.  There will, hopefully, be many of us there, patients and relatives and supporters.

There has been so much in the media of late about NICE's preliminary report including a letter signed by 25 of the UKs top oncologists - surely this will be enough to make them think again?

I shall report back on how it goes - providing ofcourse Catherine and I arnt dragged away in handcuffs for being a little too 'demonstrative' !





Thursday, 14 August 2008

Still working....

Ok, I admit it - I chickened out.  I was going to allow myself 10 days break from Sutent but by day 8 I was starting to panic and by day 9 I caved in and started taking it again !  I know it silly but Im so worried about the tumours growing again during the break. 

Today I went back to see Dr P and it was complete mayhem in his clinic.  All the testicles were there as usual (I forgot to ask them where they all were last month) plus a load of prostates and quite a few kidneys.  This is the first time Ive met up with any other kidneys at clinic and I have to say they all looked pretty poorly.  They come from all over the midlands to see Dr P and a lot of them cant get funding from their PCT, and they certainly wont now.

The clinic was packed, standing room only, and was running about 3 hours behind.  Im fairly sure the kidneys were there because of the news last week of NICE's decision, a couple of them were in with Dr P for over an hour and came out very distressed.

The lovely WI ladies were bringing round tea and coffee and sandwiches - I was worried I would be there all night.  Fortunately Dr P's registrar, Jo, was there as well, asking if any patients would be happy to see her.  Few accepted, they all wanted to see Dr P.  I shoved my hand up quite happy to be seen by Jo, she knows her stuff.

We chatted for a while about how the past 8 weeks had gone and she was really impressed I had managed 7 weeks before taking a break.  My Hb is a bit low (not surprising) but that will soon be sorted out with a few juicy steaks and some spinach - nothing to worry about she said.

Then she examined my lumps.  And pronounced them all to be still shrinking - and they are 'squashier' which apparently is a very good sign. 

This is BRILLIANT news.  I could have kissed her !!

So its all been worth it, all the grotty days and sleepless nights.  Sutent is still working and whats more its working well.  I shall have a CT scan next month just to check my internal lesions are responding too, but the signs are very very good indeed.

She wrote me a prescription for another 6 weeks and said it was basically up to me to decided when I had a break - and they would see me again in 6 weeks.

So thats it - Im in cycle 5 now.  And Im feeling really well, just in time for our holiday to Turkey on Monday.

And how very, very lucky do I feel today.



Monday, 11 August 2008

National Institute for the Curtailment of Existance...

The shock and anger quickly gave way to a steely determination that this callous report by NICE would not pass unchallenged.  Not by me anyway.  Ive spent the last few days emailing everyone I can think of and generally making a nuscience of myself. 

Gordon Brown is apparently on holiday in Scotland right now, thats nice isnt it?  How convinient for NICE to announce their preliminary report during the parlimentary holiday?

The long term ramifications of this decision are enormous.

Today it is kidney cancer drugs under threat.  If NICE manage to prevent them being funded, despite their proved efficacy, tomorrow it will be another expensive cancer treatment.  This will be the start of a two-tier health system with only the rich being able to afford the best and most effective treatment or drugs......for anything, not just cancer.

The drug companies who research, develop and trial these drugs invest millions of pounds in them.  Every trial, both here and in the US is fully funded by the drug company.  Although Sutent passed all its stages of trials here in the UK with flying colours, the drug company, Pfizer, are still investing huge amounts of money in trialing combination therapies involving Sutent and other drugs.

In fact Pfizer have bent over backwards to reduce the cost of Sutent - they now give the first month free to every patient who is prescribed it.

There is a distinct possibility that drug companies may in the future decide to exclude the UK in any future trials - therefore denying us the latest treatment for any number of diseases, not just cancer.

Much has been made of the cost of these 4 mRcc drugs - and yes, undeniably they are expensive.  But they are needed by a very small number of patients and their use is restricted by the self limiting nature of the disease, even if the drug works its not a cure - its merely buying you some extra quality time.  Compare this with the number of patients receiving costly HIV drugs - some for many years now - and the true cost to the NHS is negligable.

Without these 4 drugs kidney cancer treatment in the UK is medieval, relying on Inteferon, a treatment which is 30 years old and has a very poor response rate, or HDIL2, the treatment I received which is only appropriate for a very small number of patients and also has a poor response rate.

So its simple really. 

Without these 4 drugs we shall all die an early death.

Without these drugs we have no hope, nothing to fight with.

And that cant be right can it?




Thursday, 7 August 2008

Shocked and disgusted......

I heard the news this morning whilst I was still in Brighton.  I couldnt believe it at first.....

NICE (National Institute for Clinical Excellence) has turned down approval for all FOUR kidney cancer drugs.

ALL of them.  Sutent, Nexavar, Avastin and Torisel.

So thats that.  According to NICE we (advanced kidney cancer patients) should just give up and die - quickly and quietly.

The clinical effectiveness of these drugs is beyond dispute - NICE even admitted that.  But its the cost they wont approve.

And yet a mere few months ago Gordon Brown said 'No patient will be denied any drug on the NHS on cost alone'.

Im stunned and shocked and distressed by this news.  I have funding which will continue, but any patient applying now will be turned down.  No PCT will approve funding now - even if the final decision isnt applicable until Janurary.

When countries such as Mexico, Argentina and Korea fund these drugs rountinely is it any wonder we, here in the UK, are considered a 3rd world country as far as cancer treatment is concerned?

(Just wanted to add Ive been off Sutent for just 4 days now and I feel GREAT !  All side effects virtually gone.  I shall start taking it again next week.  And in future I shall listen to Dr P when he warns me a particular course may be 'challenging' !!)




Monday, 4 August 2008

Time for a break....

I made the decision yesterday after several truly awful horrible days. 

Days spent in bed feeling sick, in pain from my split infected fingers and feet, sleeping on and off due to the extreme fatigue, pain in my armpit and back and generally feeling just DREADFUL.

My body was telling me, in no uncertain terms, it needed a break from Sutent.  Ive been taking it for over 4 months and have only had 3 weeks break so far - and at the highest dose of 50mg.  I really wanted to keep taking it until next week and was determined to do so but there comes a time when quality of life is more important.

So I stopped taking it yesterday.  7 weeks non stop is enough.

Ofcourse Im running the risk of my tumours starting to grow again during the next couple of weeks.  But I think this is the right thing to do - I cant spend the next week in bed getting weaker and more ill.

It wasnt an easy decision, I agonised over it for ages, but Im sure it is the right one.  Life, no matter how long or short, is for living, not merely existing.