A journey of another kind....

Up Pompeii

Sat, 11 Oct 2008 05:23:40 GMT

My legs ache. In fact my calves are killing me today. I really hadnt any idea of what Pompeii would be like but I expected a nice gentle stroll through some ruins, peering at a few pots. Oh no, its not like that at all. Its more like The Krypton Factor.

We docked in Naples nice and early and once again Martin and I decided to eschew the organised excursions and do our own thing. That is - go to Pompeii on the train. First we had to run the gauntlet of Napolitan taxi drivers. They are a determined bunch - and they tell fibs. All of them telling us the train would be as expensive as hiring a taxi for the day. My maths has never been brilliant but at 100 Euros for a taxi and 2.4 Euros for a train ticket even a Labour Chancellor could work out which was the cheapest.

Naples itself is - well, to be honest, its a bit of a dump. And the traffic is dangerous, almost on a par with Rio. Trying to cross the road is really taking your life in your hands, the roads dont seem to have any lanes and cars and buses and mopeds come at you from all directions. The Italian style of driving is 'if all else fails lean on your horn - and then stick your fingers out of the window'.

Eventually we made it to the station, unscathed, where we met up with another adventurous couple off our boat, Mike and Kath, who were going to Pompeii too. Deciding it would be much more fun to get lost as a foursome we teamed up, managed to buy our tickets and even find the right platform. The station was heaving - really really busy - packed with Italians wearing thick coats and jumpers when it was over 25 degrees outside ! I guess that must be a chilly day for them.

The entire train journey only took 30 mins and for most of that time we were in the shadow of Vesuvius. It really dominates the sky line there, your eyes are drawn to the long extinct volcano which caused such devastation all those years ago. Now, ofcourse, its slopes are grassy green and a great part of it cultivated. The beast has been tamed.

Pompeii is, quite rightly, a World Heritage site. Work is ongoing there and some experts believe only two thirds of the town has been so far uncovered. Which makes you wonder just how big this town was because at the moment it is massive. Street after street after street of houses, bars, shops, spas evidence the Roman way of life. Most of which seems to have been centred around sex. All the beautiful frescos in the houses have naked women cavorting on them - it would be a bit like having page 3 plastered all over your living room.

One of the most popular establishments, then and now, was the brothel. Situated down a little side street its presence was announced by the carving of a very large erect penis on the pavement outside the entrance - strangely there was nothing at all on the pavement outside the exit !

Adultery was illegal in Pompeii then - but in the true tradition of male skewed thinking - using a brothel was not. A man didnt even have to converse with the women who worked in there. Instead of telling her his 'requirements' there were pictures on the wall detailing the various positions and all he had to do was point at the one he wanted.

Most roman towns had a forum, a place where all the political wheeling and dealing was done, and the one in Pompeii is very impressive. Bascially it looks like a football pitch but with huge columns around the outside. Leading up to this the streets were full of small shops which sold bread, wine, olive oil etc and so were the equivalent of fast food. It just goes to show - things havnt changed that much really.

We were exploring the town for well over 2 hours - up and down the steep streets with their ankle twisting cobbles - hence my aching calves today - but it was the most amazing experience. Martin and I wouldnt have missed it for the world. It was however very hot there - and I can imagine it must be stifling in the heat of mid summer. So probably best avoided then.

All the time we were wandering about, out of the corner of your eye, just around the corner, rising up from behind each tree was Vesuvius - looming over the town - it really made you think how catastrophic that day must have been 2000 years ago when it erupted and swallowed Pompeii up whole - to preserve it for us.

(My blog will be migrating to Blogger.com when I return - and have worked out how to do it!)

All at sea.

Thu, 09 Oct 2008 05:39:01 GMT

There is nothing quite like it - flying out of a dank and miserable and cold Birmingham and landing in a warm and sunny Palma. And it was warm indeed - we were soon divesting ourselves of the layers of clothing needed when we left home early that morning.

The super efficient cruise organisation took over once again and very soon we found ourselves in our cabin, just along the corridor from where Caroline and I were - except we had a window ! A real proper window, not just a teeny port hole. It made such a difference with the sunshine pouring in. We quickly unpacked and trotted off to lunch.

Generally I would say the average age is even older this time - there are a lot of groups of older (70+) women travelling together, mostly widows we found out, and it was with such a group we were seated at lunch. It didnt take long for Martin, the silver tongued lounge lizard, to have them giggling and twittering and fluttering their eyelashes. So this was the start of what has been dubbed 'Martins Harem' - and its been added to greatly since then. I think he sees the start of a new career here as ships giggalo. They all seem to adore him for some reason, at least 4 of them have started knitting jumpers for him !

The food is as excellent as ever, Martins eyes lit up when he saw the rhubarb crumble and custard - honestly, you would think I never fed him at home the way he attacked it, greatly encouraged by his harem who love to see a man eat apparently - yes, but at this rate girls youll need to increase the size of those jumpers !

After lunch I gave him a quick tour of the ship, pointing out the gym on the way, then we settled down for a nice lazy afternoon in the sunshine.

Palma is such a pretty port with its castle on the hill and cathedral all lit up in the evening - and the boats ! Honestly, millions of pounds worth of sea going vessels moored up, although you rarely see anyone onboard.

Bingo remains the highlight of the evenings entertainment for many of the passengers but having learnt my lesson last time we steered well clear of it - I didnt want to fall foul of the 'Bingo Mafia' again. Instead we decided to try out the casino - where Martin promptly lost 50 Euros in record time on the roulette wheel.

The first day is spent at sea - eating and sunbathing mainly. The weather was gorgeous, not too hot but perfect for lying around reading. Martin disappeared to the gym for a couple of hours and pronounced it adequate for his purposes, then settled down with his growing harem for afternoon tea and gossip.

I started reading a book aptly entitled 'How to Murder your Husband'...

SUCH a relief....

Sat, 04 Oct 2008 07:15:27 GMT

Its been a long time coming - 21 months to be exact - but at last it appears I have this bloody disease under control - officially.

I had the results of my CT scan on Thursday.

In the past 5 months one tumour has grown slightly. All the others are the same, no growth at all. So I have 'stability'.

Not only has Sutent slowed the growth of the cancer in my body - it has stopped it altogether.

I can hardly find the words to express how fantastic this news is. After all the set backs and disappointments, after all the nasty vile treatments and procedures and operations, after all the pain and the tears and the worry and fear, after fighting for my very life day by day, week by week - at LAST I can relax a little.

And I intend to, starting on Tuesday when Martin and I go on our cruise. We really DO have something to celebrate now and we can do it in style.

Ofcourse I realise Sutent could stop working at any moment - who knows how long this will last ? But however long, or short, it is Im going to make the very best of it and enjoy every single second because I really think Ive earned it.....

Best foot forward....

Tue, 30 Sep 2008 08:20:15 GMT

Cat, Ed and I in a very old graveyard, Western Australia.

Ive been very fastidious in the care of my hands and feet since taking Sutent. Keeping them dry and clean and using copious amounts of 'Udder Cream' which is recommended for 'hand and foot syndrome' - something a lot of chemotherapy patients suffer from. On occasion my fingers have been pretty sore but in general my feet have been fine.

Except for one spot on the ball of my left foot. Just a small hard spot, but right on a pressure point.

Yesterday I went to see a chiropodist thinking maybe she could put a dressing or something on it to make walking easier next week. I explained all about Sutent and the effect it could have on your hands and feet. She listened very patiently - took one look at the sole of my foot - and said 'Its a corn'

A corn ???

Boy did I feel foolish. There I was rabbiting on about Sutent and blood flow restriction and it ends up I have a CORN !

She was very sweet and admitted corns could be very painful - and then attacked it with a scalpel. Which really hurt !!

After a few painful minutes she had hacked it out and put a big dressing over the hole that was left. And I hobbled out of her surgery in more pain than I had entered. But it will get better, by next week she promised.

Just goes to show you - here I am battling a terminal illness and the worst thing I have to worry about right now is a corn !!

Feeling good - looking even better !

Sun, 28 Sep 2008 07:32:57 GMT

Grace - who is a big girl now aged 3 !

Martin gave me a prod in the back yesterday and reminded me I hadnt made a blog entry for a while. He pointed out, quite rightly, that I should write about the times I feel well - not just the difficult times.

And I DO feel well. Incredibly well actually. Better than I have done for ages now. Cycle 6 week 3 and minimal side effects. Im getting out and about far more than I used to and although I still get tired Ive definitely got loads more energy.

Im loathe to write about this in a strange way, as if putting pen to paper (so to speak) will break the spell. In the back of my mind is the fact this could change so quickly and so dramatically. So Im just enjoying every single moment of it and not thinking too far ahead.

This week, however, brings a big dose of reality. A CT scan on Wednesday and seeing Dr P for the results on Thursday. This is my first CT since May and will be definative evidence of how well Sutent is working - I hope !

Im praying for good news - it has to be good news. I feel so well and look so well and my lumps are still smaller. In fact my 'horn' has almost disappeared now, its just a slight bump. The pain I had in my wrist has gone completely and its been ages since I had any pain in my armpit. So all the signs are there - I just want to see the CT report to confirm it.

Then we will definitely have something to celebrate and on the following Tuesday Martin and I are off on our cruise so we can do it in style !

Helen

Fri, 19 Sep 2008 08:35:12 GMT

My friend Helen died on Wednesday from kidney cancer aged 41.

We never met, but had spoken on the phone and exchanged emails over the past 18 months.

I will miss her bright, positive outlook on life. I will miss the easy, comfortable way we used to chat about the mutual problems kidney cancer brought into our lives.

I will miss you Helen.

God Bless.

NICE squirm.....

Thu, 18 Sep 2008 08:50:33 GMT

It was an awful long drive but it was SO worth it.

I picked up Angela in Bristol, the wife of another patient on Sutent, and it was lovely to have some company for half the journey. Angela told me about the fight they had with their PCT to get Sutent funded - such a dreadful stressful process to have to go through, especially with Gary her husband so ill at the time. Fortunately his health has improved remarkedly since taking it - yet another success story.

Being a woman Angela's map reading skills were excellent and we found the Pavillions easily and even managed to park right next to it. Ive never been to Plymouth before but the bit I saw of it yesterday seemed very nice - a pretty little town.

We were a little early, which was good as we sat with a coffee and watched the press arrive. The local BBC film crew were there plus a very nice young lady called Kate from The Telegraph. Kate in particular was very interested in our stories and why we were there. By this time the rest of the gang arrived headed by Rose, who runs the Cornwall Kidney Cancer support group tirelessly. We were interviewed and had our photos taken and were then invited in for lunch.

However much NICE spend on their communications budget they certainly dont over spend on the refreshments one. There were a few small rolls, some sausages and slices of dried up pizza and some teeny scones. Not that I ate much anyway - the members of the board were there too and I was too busy talking to them. I was lucky enough to corner Dr Gillian Leng, who is the Guidance Director, and shoved copies of the latest research in her hands and asked her how, as has been quoted by NICE, she could justify saying Sutent only gave 'a few extra weeks of life of poor quality' She struggled with this question and said she would try and answer it fully during the official Q&A session. Ok Gillian, I shall let you off the hook to eat your pizza - but only for now.

The session started with some NICE propaganda about the wonderful work they do in the world of preventative medicine - with the anti smoking and obesity campaigns. And yes, they do very important work, but this came over as a mutual back slapping exercise and made scant reference to the assessment of cancer drugs. The board members there to answer questions, Prof Michael Rawlins, Andrew Dillon and Dr Gillian Leng looked very smug and comfortable during this phase, but that soon changed when the questions started.

Rose opened. She is so incredibly articulate and well informed. She spoke quietly and calmly pointing out that whilst preventative medicine was indeed important there were issues regarding the denial of funding for cancer drugs which were far more imperative as peoples lives were at stake. Andrew Dillon waffled on for ages about preventative medicine and in true politician style avoided the question.

The discussion got a little bit more heated then as we, well I certainly, felt we were being patronised and fobbed off.

NICE's attitude seemed to be that they published their report - and then washed their hands of the whole affair - Pontius Pilot stylee.

The board members all agreed that Sutent was indeed an effective drug - but the cost effectiveness as worked out by the QALY system deemed it too expensive. When questioned about the true cost of Sutent Andrew Dillon even had the gall to suggest we (terminally ill cancer patients) should be lobbying the pharmacutical companies - until I pointed out that was HIS job. It is HIS job to provide guidelines for the very best value health care for US - the taxpayers and customers.

Globally, 53 countries fund Sutent. The UK is the only country to decide to deny funding. What does this say about the state of the NHS right now? That we, as the 3rd richest economy in the world, cannot provide the same cancer treatment as the likes of Mexico or Argentina?

By this time the board members were visibly squirming in their seats. Although we may be small in number Im sure they underestimated our determination. And the press were still there, which was excellent.

Prof Michael Rawlins abruptly wound up the Q&A session, which is a shame because we sure had them on the back foot by then.

The point that really struck home to me was that we (patients) and NICE shouldnt be treating each other as the enemy. NICE should make provision for proper patient involvement and have an advocacy system to resolve these problems. They should be working with us - not delivering their report and then hiding behind their desks.

To simply refuse to fund the most effective and up to date treatment for mRcc is not only callous - it is inhumane. A solution must be found.

The 'threshold' figures that NICE work within when making their decision havnt been increased for 9 years. Not even in line with inflation. And yet the NHS budget has doubled in that time. Surely that is something they should be looking at - and urgently.

Im sorry NICE - this isnt going to go away and neither am I. I shall be there in November in Stoke for your next Q&A session. And I shall be demonstrating in London again shortly.

Bliss.....

Thu, 11 Sep 2008 07:32:23 GMT

My weeks break started last Friday, and is almost over ! And it has been bliss - I feel fabulous !

I had a little blip at the beginning of the week when a cold I had developed into a chest infection. Because I was so short of breath Dr P suggested I come to his clinic on Tuesday for a check up. A chest xray was completely clear - and I do mean completely. The medistinal line was thin and uninterrupted - and this was where tumours showed on the lymph nodes on my last CT scan. So he prescribed me some anti biotics and pronounced me fit and well - which I am now they have started working. So Im just waiting for the all important CT scan which I should have any day now.

Next Wednesday 5 of us from the protest group will be attending NICE's board meeting in Plymouth. There is a question and answer session prior to the meeting and we have been invited to submit some questions. Originally I think this was intended to be a quiet affair but after yesterdays headlines about NICE spending more on 'communications' than actually evaluating drugs I think press interest will be intense. Which is great - we must keep the pressure on.

The clinic I attend produced results from a reseach project it has been doing into the effectiveness of Sutent and Nexavar. They really are astounding. Patients given these drugs lived on average for 22 months (!!) Those denied them lived on average 7 months. So it is finally clear that these drugs extend life not for a few weeks, or even months, as NICE reported - but can extend it for almost 2 years !

With proven statistics like this how can NICE continue to deny the effectiveness of these drugs?

And with the true cost of Sutent factored at 28K a year - well under NICEs limit of 30K - the preliminary decision, at least for Sutent, must be over turned. Mustn't it?

I think the board meeting next week will prove very interesting - thats if I dont get lost on the way - its an awful long drive !!

Beyond worth....

Fri, 05 Sep 2008 02:18:30 GMT

A lot of fellow patients, further down the 'Sutent path' than I, have told me that the side effects of sore mouth/hands/feet wear off after a few cycles. And its true, for me anyway. Im now in cycle 5 and my mouth, hands and feet are much improved. The upset tummy/bloated/tiredness is the same but maybe Im getting used to this now as Ive found this month quite tolerable.

The 'horn' on my head is almost flat now, the lumps under my arm pit are definitely no bigger and Ive had no pain from it at all for several weeks. And most importantly I feel well - and I look well. So all in all things are going well - I think ! I shall have to wait for my next CT scan, due any day, for confirmation of this.

The battle against NICE and its appalling preliminary report continues. The press, media and public support is as strong as ever and the story is still being reported. Which is so important, we cant afford to allow this to be dropped, especially when NICE are publishing blatantly false information.

I would like to grab one of the 'suits' from this government body by his scrawny neck and drag him home to meet my family. To meet my husband and my children. To see how happy we are and how invaluable this 'extra time' I have been given is. I would like him to explain to Edward, my little ray of sunshine, who refuses to be upset about the future while Mum is here and well and able to do things, why other Mums and Dads wont be given this chance.

I would like him to explain to all of us how this decision was reached based on a flawed formulae and false information.

I would like him to tell me to my face that Sutent only improves life expectancy by a 'few weeks' and the quality of that life is poor (as one ill informed member of NICE stated) while he watches me chase my 3 year old grand daughter round the garden.

And then I would like to slap his silly face and tell him to stop playing God with peoples lives, and do the job he was originally employed to do - assess the EFFECTIVENESS of these drugs - properly.

NICE as a body seem to know the cost of everything - but the value of nothing.

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

Sun, 31 Aug 2008 07:19:22 GMT

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)