Pins and Needles.........

When you get a call offering you a last minute cancellation for a CT scan you dont turn it down - even if it is on New Years Eve. So it was that at 12 I turned up at Selly Oak, still feeling queasy, and sat down in the waiting room to start drinking a jug of that vile contrast stuff. Ive realised its not just the taste that is awful, its the smell as well. Its a bit like a sweaty jock strap (yes I have smelled a few of those in my time). The temptation is to drink it as quickly as possible just to get it over with, but you have to drink it slowly, over an hour - its like torture.


This is the first time Ive been to Selly Oak for any of my treatment. Usually it is all carried out at the Queen Elizabeth where the Cancer Centre is. But Selly Oak is part of the same Trust so I guess it was inevitable I would end up there at some stage. Its also the hospital I worked at for 12 years and I was a bit nervous as I walked through the doors as a patient for the first time. I neednt have worried though - the place was so quiet, Ive never known it like that before. I dont think they expected many patients either because the place was FREEZING. Sat there wearing nothing but my sexy gown and socks (I wasnt going to take those off!) I was shivering. Can you believe the radiators were off? It was minus 3 outside and not much warmer in that waiting room.

Drinking the contrast was bad enough but there was worse to come. Ive often joked about my lack of veins since I had IL2 but the fact is its quite a serious problem now - as I found out. 3 doctors took nearly an hour and had 7 goes before eventually one managed to get a needle into a tiny vein on the back of my right hand. I felt like a pin cushion. And looked like one with bits of cotton wool stuck all over my arms. Because such a little vein is used when the dye is injected it STINGS like mad. I know these are minor discomforts in the grand scheme of things, numerous 'sharp scratchs' from the needles then the hot burning stinging going up my right arm while Im being scanned, but Im getting fed up of being hurt. The scan itself is no problem now. Im so used to lying in that noisy machine with a disembodied voice telling me when to breathe now, and its over in a few minutes.

So thats that now until I get the results, which wont be till 22nd Jan. when I next see Dr P. I felt a bit yukky after the scan, which is pretty normal, so spent the rest of the afternoon and most of the evening in bed - missing all the New Year celebrations. I dont really mind though - just waking up and it being 2009 is enough of a boost for me and Im starting to feel much brighter and more positive again.

So - whats in store for 2009 ? Well I have a BIG birthday coming up in a few weeks, and its Catherines 18th in February and I feel as if Im ready for another adventure. Not sure when or where yet or even how - there are so many places I would love to see.

Post Christmas Blues

I guess we all over do it at Christmas to one extent or another. I certainly did and Im paying for it now. Not in the eating and drinking department, in fact I ate very little and had only one glass of champagne, but in the cooking/cleaning/looking after everyone else department. Its not that I didnt have any help, Martin and the kids were great, all pitching in when required - but the kitchen is my natural domain as I love cooking so much and I spent most of Christmas Day and Boxing Day in it.
We had a couple of lovely days with family and friends but by Boxing Day evening I was feeling pretty awful - and looking it too according to Caroline.
On the Saturday morning I could hardly get out of bed - I was SO tired. Tired is maybe the wrong word - so totally and utterly exhausted I could hardly think straight is a better way of describing it. And more than a bit depressed.
This was most probably due to the fact that 3 of my KC 'friends' had died over Christmas - 2 on Christmas Eve and one on Christmas Day. Such a sad, poignant time of year to lose someone. The next day I was feeling just as bad, and the day after that so I just resigned myself to doing little and sleeping a lot.
The depression, or 'blues' - which is probably a better word because I recognise Im feeling a bit down, is almost certainly due to several things. Being so tired, hearing such sad news and being in the 3rd week of Sutent. I hate feeling like this, its so unlike me but I just cant seem to shake it off. So rather than trying to 'force' a recovery Im just going to be kind to myself, allow myself to feel a bit down and hopefully the fog will lift soon. Im sure it will. The trouble with me is that when Im feeling well I tend to charge all over the place doing things as I used to - and I cant do that any more. Not for long anyway. Its much better to do things slowly, at an even pace and Im starting to learn this !

New Years Eve tomorrow night - and I shall be tucked up in bed nice and early with a cup of hot chocolate so hopefully I can wake the next morning feeling much better and ready to face the New Year.
2009 - Who would have thought it ?!

Happy Christmas !!

I had an early Christmas present yesterday - and it will certainly be the best one Ive ever received. Oh yes you can keep your diamonds and fur coats and sports cars. Yesterday I was told by Dr P that the tumours he can feel are shrinking. All of them. By quite a lot. Which means I not only have stability but I now have shrinkage. Its almost too good to be true, I keep pinching myself to make sure Im not dreaming.
Im due a CT scan in a couple of weeks just to confirm this but as far as Im concerned the celebrations start now.

Christmas is a time to count your blessings and this year I have so many I dont know where to start. But its also a time to remember those who havnt been as lucky as I am, so on Christmas Day I shall be raising a glass to my friends who have died this year.....and also to all my friends who have supported and encouraged me. That will be quite a few glasses !

Happy Christmas everyone - and a very healthy New Year!!

Ubergruppenfurher Pancho

We first met Pancho, the entertainments organiser, on quiz night. He is Austrian with a very strong German accent and an admirable sense of duty.

It is his mission in life to get as many visitors involved in the entertainment programme as possible. Particularly Catherine and I apparently. He hunts us down at breakfast to see what our plans are for the day. A typical conversation will go like this.....

"Are you being lazy and lying around the pool all day again?"

"Yes Pancho...the sun is shining and we want to get a tan"

"You like shooting?.....with rifles?"

"Ermm no thanks"

"You like pool?"

"No we cant play"

"I will learn you"

"No thanks Pancho"

"It was not a question...It was an ORDER!!"

Ofcourse you have to imagine his heavy German accent to realise why Catherine and I were doubled up with laughter.

Tonight there is another quiz and we have promised faithfully to take part....to be honest we dont dare not turn up...goodness knows what 'punishment' he would have lined up for us !

Last night when we were out for dinner we met a lovely couple from Bristol and ended up sitting next to them and talking all evening. Barbara, unaware of my health problems, was telling me about her sister who is currently fighting breast cancer. This made me think just how many families are affected by cancer right now. It seems just about everyone I talk to has a relative or close friend suffering from the disease in one form or another.

On Saturday I started cycle 9 of Sutent. Sometimes I cant quite believe how far I have come, especially when I think that this time last year I was lying in a hospital bed in Manchester having hallucinations !

This year Im lying on a sunbed in Fuerteventura hiding from an Austrian with a rifle !!

Sunny Fuerteventura......

.........and it certainly is at the moment. We landed at 5pm and it was still 25 degrees, slightly different from the torrential freezing rain we left behind.

We first discovered Fuert about 10 years ago, the attraction being the beaches, which are fabulous, and the surf, which is 'pumping'...so Im told !

There is no doubt it is a beautiful island in its own way although pretty devoid of any vegetation due to the fact its volcanic. 10 years ago Fuert was really taking off as far as tourism is concerned. Due to its position just off the north African coast it has year round sunshine. New bright shiny apartments and villas were being built almost over night and a lot of British visitors saw this as a good investment opportunity. Although the development never reached the levels seen at Tenerife or Lanzarote it soon reached saturation point....after all there were still only limited flights from the UK. Fuert was holding its own and the bars and restaurants were doing well, although it was hard work. Then this year came the first of 3 blows to the tourist industry over here. XL Airlines went bust and recently RyanAir announced they would no longer be flying here after a disagreement with the Fuert Tourist Agency. So no more cut price flights. And then ofcourse the credit crunch which has hit everyone and the tourist industry everywhere very hard, and now the final blow .....the weak pound which is almost at parity with the Euro now.

Apartments and villas bought a few years ago are worth about a third of their purchase price, thats if they can be sold at all. All building has stopped with many developments left unfinished, just concrete shells. The lack of visitors now means bars and restaurants are closing and those that are still open are having to reduce their prices and fight for the few customers left.

It really is quiet and this is supposed to be one of Fuerts busier times, around Christmas. The place Catherine and I are staying has about 30 other visitors, and most of them are from Germany. Which is quite nice actually, it very peaceful here. Yesterday we spent the afternoon sun bathing around the pool which we had virtually to ourselves.

Apparently, according to Catherine, I've become a bit of a 'babe magnet'. Everywhere we go there will be some young man who wants to strike up a conversation with me. This would be very flattering but for the fact that its blatantly obvious why this is occuring. Catherine. In her lovely naive teenage way she has failed to realise that the easiest way to chat to a girl is to pay attention to her mother ! And boy does she get some attention. She doesnt even realise its happening but heads turn when she walks past with her glossy dark red hair and pale skin...she is completely oblivious of it and it makes me smile. Oh to be 17 again !

Last night in the bar there was a Music Quiz. 'Goodie' I thought, I can show off my encyclopaedic knowledge of 1980's disco and punk. No such luck, most of the questions were about up to date obscure dance music or R n B. So Catherine wiped the floor with the opposition and won a cocktail.
A very strong cocktail.
Which is probably why she is still fast asleep now !

A small price to pay

Im not quite sure where Ive got this new found confidence from - Ive never been a shrinking violet exactly but now Im finding myself going into meetings/interviews full of people Ive never met, walking up to them and introducing myself. Maybe its because Im so selfsure of the subject we are about to discuss or so determined that my voice, and that of other patients, will be heard.

The past 2 weeks have been full of such meetings - PCT patients committee meetings - and on Monday I met with a medical research company to be interviewed on the side effects of Sutent. I was especially pleased to take part in this. Much is made of the side effects, after all the treatment, although it isnt called chemo, is tantamount to chemotherapy in that the side effects are the same. And looking back over this blog I have moaned about them often enough !

But the fact of the matter remains, a fact I wished to reinforce with the pharmacutical companies, however unpleasant the side effects can be from time to time its a small price to pay. For what it the alternative? And apart from a few days over the past 9 months life has carried on pretty much as normal for me - just look at what Ive done, where Ive been. what I have achieved - and none of that would have been possible had I not been on Sutent.

In fact to put it very bluntly - I would be dead if it were not for Sutent - thats the bottom line.

Still, its encouraging to see the drug company who make Sutent are looking at the side effects, especially the long term ones, presumably with a view to 'tweaking' the drug in some way to reduce them.

The interview, which took over an hour, highlighted 2 things. That patients need to be fully informed of the possible side effects they may suffer and the fact they can be controlled and managed to a greater extent - and how fantastic (the interviewers words) I look right now. He also commented on my 'seemingly unshakeable' positive attitude - no matter what was thrown at me.

Ok - so I may have diarohhea, sore hands, cramps, and various other unpleasant visitors for part of each cycle but the fact is Im still alive. Like I said, its a small price to pay. And how lucky am I to have been funded for Sutent anyway.

Christmas is almost here, a time to look back and be thankful for everything the past year has brought you - and I have so much to be thankful for.

Tomorrow Catherine and I are off to Fuerteventura for a week - for some Mum and daughter time which I think is badly needed. Of all my children Catherine is the one who worries me most. At times she displays quite a lot of anger towards me - its something I understand completely. My own mother died when I was young and for ages after I felt so CROSS with her for leaving me. I think its a natural reaction but one that needs to be talked about and dealt with, hopefully she can recognise why she is feeling this way.

And it will be a nice week in the sun (hopefully) and a rest before Christmas really hits me when we get home !

I also start cycle 9 tomorrow - Im starting to feel an old hand at this now !

James, Gordon and me....

Say hello to my new boyfriend. Gorgeous isnt he? Unfortunately I was in the middle of a throng of about 200 other women who felt the same. It was obvious he only had eyes for me though !

For those who dont know the hunk on the left is James Martin, a celebrity chef, and he was one of the stars of The Good Food Show at the NEC where Martin and I spent all day on Sunday.We were there for over 6 hours wandering around all the food and drink stalls, demonstrations and exhibitions - I was in heaven. Gordon Ramsey was there as well but he was even more popular than my James, if thats possible, and I couldnt get anywhere near him.

Apparently some time during the morning it was decided that I would be driving home, although I have no recollection of this conversation, so Martin could indulge in the free samples of wine, beer, whiskey and liquers - which he did with great gusto.

Despite being right at the end of cycle 8 I felt surprisingly well and apart from being a little tired at the end of the day suffered no ill effects. Its strange how much better I feel now than earlier in this cycle. Mind you, seeing James could have something to do with that - he certainly seemed to 'perk' me up !

Ban on Kidney Cancer drugs lifted !!!

A ban on drugs that can give kidney cancer patients many months of extra life is to be lifted. At least two, and possibly all four, of the medicines that had previously been deemed too expensive to prescribe will be approved by the National Institute for Health and Clinical Excellence (Nice) early next year.
The move is a major victory for campaigners, patients and cancer specialists. They had described Nice's refusal to approve the drugs - which cost up to £70,000 a year per patient - as unfair, inhumane and condemning patients to an unnecessarily early death.
Oncologists believe Sutent, Nexavar, Avastin and Torisel could benefit about half of the 7,000 people a year who are diagnosed with kidney cancer. No other drugs are as effective at extending life in patients with advanced forms of the disease or in whom cancer has returned after a period of remission.
In August, medicines watchdog Nice refused to approve the drugs because they did not represent good value for money. But sources at Nice now say that Sutent will be given the green light when its appraisal committee holds its final meeting to discuss the drugs on 14 January. At least one more drug - likely to be Avastin or Nexavar - will also be approved, the sources added.
The move follows Health Secretary Alan Johnson's decision this month to overhaul the way new medicines are assessed for terminally ill patients. Denying cancer patients access to drugs that are widely available abroad has become a major political issue.
Nice immediately promised to be more flexible when examining the merits of such drugs, even if they were so costly they failed to meet its appraisal criteria.

Ban on kidney cancer drugs lifted Science The Observer

I dont know what to say really - Im completely overwhelmed and SO relieved, I was actually in tears when I read the news.

Thank you everyone who signed petitions, wrote to their MP's and gave such wonderful support during the past 4 months to our campaign.

Where's the loo ??

I was kind of hoping, expecting, to have an easy time this cycle. Im not sure why, maybe because I thought it would be only fair after last month. But yet again I have been plagued with diarrhoea. No matter how many loperamides I take I still find myself rushing to the loo, buttocks clenched, at least 6 times a day. Anyone who is unlucky enough to find themselves in my way on one of these sprints gets shoulder barged to the ground - Im expecting to be signed up by the All Blacks any day now ! And Im sure I should qualify for shares in Andrex !
That aside the only real problem I have right now is fatigue - and ofcourse that could be due in part to constantly being on the toilet. But this hasnt really stopped me from doing things. As long as I make sure there is a loo within sprinting distance.

On Wednesday I went to a preliminary meeting for the TeleHealth initiative - and came away with a bundle of reading material. The pilot scheme doesnt actually start until January so I have a few weeks to work my way through it - good job really because its full of 'NHS speak'.

Tomorrow it is the annual kidney cancer conference which is being held in Birmingham, so for once I dont have to travel very far. Dr. P is speaking on the care of kidney cancer patients as is a CNS on the side effects of Sutent - which could prove interesting for me, maybe Ill find another way of dealing with my 'running to the loo' syndrome.

Hmmmm......I do hope they have a loo just outside the conference hall !

NICE Board Meeting - Stoke - 19/11/2008

Catherine and I arrived nice and early for the meeting today - despite getting lost and ending up in Newcastle ('under Lyme' fortunately and not 'on Tyne') We met up with Kay, her son, daughter-in-law and husband and another kidney cancer patient, Julie, who had come to offer her support. A reporter and photographer from The Sentinel, a local Stoke newspaper, was there too.

The meeting kicked off with an introduction on how the drugs appraisal process works - from the first evidence based decisions to the consultation process. As we all know in the past this entire process has left a lot to be desired, with some drugs waiting for over a year to be appraised and approved - or not. This is how the 'post code lottery' occurs. Without published guidance from NICE it is up to each individual PCT whether they fund these drugs or not. This should all change now however. From now on the appraisal of drugs will start before a licence has been approved so the appalling situation of the post code lottery should never happen again. This doesnt ofcourse help patients like Kay who are left waiting until January because of the callous decision of their PCT.

The question and answer session was fairly lively with quite a few topics being covered but I managed to get my question in which was in reference to the news today about the governments deal with the pharmaceutical companies and the supplementary advice NICE are proposing for end of life drugs. It was a bit early to expect any considered reaction to todays news, after all it had only been released at 9.30am, and as far as end of life drugs are concerned there has to be a period of public consultation and 5 weeks is the bare minimum. The end of life medicines appraisal was covered comprehensively in the board meeting.

Kay made a very moving speech questioning why other patients were taking Sutent and yet she wasnt allowed the chance. There was much sympathy from the board for her but they reiterated that it was a PCT decision at the moment so really our anger should be directed at North Staffs PCT. As far as Sutent is concerned new evidence has been submitted by the pharmaceutical company so this, along with other evidence that has been submitted by both oncologists and patients, gives us good grounds to be hopeful I feel.

Kay and her family left at the end of this session - no nearer to getting the Sutent she so desperately needs.

I stayed on for the board meeting as I really wanted to hear all about the appraisal of the end of life medicines. NICE intend to issue supplementary advice on these drugs which are used in cases of 'rarer cancers' - which must fit the following criteria......
Used for less than 7000 patients per year.
Used for a terminal illness where the life expectancy is, on average, less than 24 months.
Evidence this medicine offers a substantial extension to life compared to current NHS treatment.
The cost of this medicine exceeds the upper range normally considered - £30,000 per year.

Now to me the above describes Sutent perfectly - and most probably the other kidney cancer drugs under review at the moment. This is where I think our best hope lies. NICE are keen to implement this advice - they have only asked for a very short consultation period, ending in January too.
Ofcourse this advice will apply to other cancer drugs too, not just kidney cancer, so it is probably the most important appraisal on the table right now.

I have to admit I left with a grudging respect for NICE - in fact I thanked the chairman personally for his work on the end of life medicines. They are, at last, trying to do the right thing and no longer seem obsessed with the cost of everything. Its a shame it has taken this long. Lives have been lost, literally, waiting for this mess to be sorted out.

Whenever I see a picture of me and my family together I always feel so short - which is quite an achievement when you realise Im 5ft 10 !


This picture was taken at Carolines party and shows just how well I look (and slightly tipsy!) at the moment.

I dont normally interact with other blogs on here, mainly because mine is about all things 'kidney cancer', but Im going to make an exception this time
2 bloggers, Yasmin and Lyn, have been kind enough to nominate me for a 'Marie Antoinette' award - which is for 'Real blogs for Real people' Im constantly amazed that anyone actually wants to read my witterings let alone give me an award ! Thank you both of you, Im really touched and when Ive had a hard think I shall pass it on.

Today, with Catherine, I am driving up to Stoke to attend another NICE question and answer session and board meeting. Im going primarily to support another patient, Kay Hopkins, in her fight to secure funding from her PCT (Stoke) for Sutent. Kay has had a dreadful battle with this particular PCT - they have even denied her the right of appeal.

Some good news on the horizon this morning - the Government have announced a new deal with pharmacutical companies which will reduce the NHS drug bill by over 400 million pounds a year. It will also reduce the cost of new and expensive cancer drugs. This, combined with the new advice NICE are to impliment in Janurary in regard to end of life drugs, SURELY will mean the end of the post code lottery for kidney cancer patients?

I shall ask the NICE board that very question

Making a difference

A couple of months ago I was invited to take part in an 'Expert Patients Course' at my GP's surgery. The title is a bit of a misnomer really as its designed and aimed at patients with a long term chronic health condition such as diabetes or arthritis and the idea is to help them self manage their condition. However I found it very useful and informative.

The course lasted for 6 weeks and at the end of it I was invited onto the committee of the Patients Health Forum for my PCT. I accepted immediately for two reasons. firstly I think it will be another stage for me to 'bang my drum' about RCC drugs and secondly because it will be a way of keeping a finger on the pulse of what is happening in the NHS.

I was certainly right in the second instance. At the first meeting I attended I was invited onto the board of the PCT's 'TeleHealth' new initiative. The general idea of this is that patients with conditions which require regular monitoring - blood sugar readings, peak flows etc - will be able to do their own readings at home, or have a district nurse do them, and the results then sent by a dedicated phone or computer line for assessment at the surgery or hospital. Which sounds like a good idea doesnt it? However, we still have to see how this will work out in practice.

So I may not be able to work any more, and I do miss it when Im feeling well, but by involving myself as a patient in these working groups and committees I may be able to make a difference in some small way. Plus Im meeting a lot of nice people and making new friends. And who knows where this may lead ? Minister for Health next ! ha ha !

Cycle 8 !

The clinic was eerily quiet on Thursday when I went for my 6 weekly check up. Usually it is packed with standing room only and running at least an hour behind time. But this morning there was only me and a couple of 'prostates'.

I know they were 'prostates' because, unusually for men, they were chatting away together about their condition and treatment. Men are generally pretty reluctant to talk about anything to do with their 'bits' (unless its to boast about the size) but these 2 chaps treated me to a full description of both the operation they had and the examinations required. This made me smile. Especially as their wives were joining in with much gusto !

When the clinic is quiet I always wonder why. What has happened? Where is everybody? I get used to seeing the same faces week after week so its noticable when one disappears - have they got better? or have they succumbed?

Dr P was busy with a poorly patient so yet again I was called in to see his registrar. I always think its a good sign when you are 'demoted' to see the registrar - and yet again it was. Everything is fine. My blood results, surprisingly, are still normal. I say surprisingly because I have been on the highest dose of Sutent for over 8 months now and it is, after all, a toxic drug.

We had a quick chat about how I was feeling, which is great at the moment, and about how I feel at the end of each cycle, which is pretty grotty. The answer to this would be to reduce the dose I am taking but to take it continuously, so I am getting the same amount of Sutent but evened out over the cycle. Which sounds like a great idea to me. However, she wasnt prepared to make that decision until I have had my next CT scan which is due in the beginning of Janurary and discussed it with Dr P. So all in all another positive and very encouraging visit for me.

Today is Carolines 50th birthday - a day I thought I would never see. And tonight she is having a big party. And I will be there. How fantastic is that?

HURRAH !!!

NICE sets out its own proposal to increase drug access 04 November 2008

The UK’s health watchdog has announced a new proposal that will see some life-extending drugs being made available to patients, when in the past they would not have been. The independent announcement by the National Institute for Health and Clinical Excellence coincides with Professor Mike Richards top-up review and comes almost a fortnight after NHS officials called on MPs for a debate on the value of life-extending medicines.
The NICE proposal will plan to see changes to its technology appraisal process whereby NICE will provide additional evidence to its Appraisal Committees for drugs that may have a clinical benefit but are not normally deemed cost-effective. “The Institute is aware that patients, and the public, place considerable value on treatments that offer the possibility of extending life when we are close to death,” said Andrew Dillon, NICE Chief Executive. “We believe that we should reflect that view when we are asked to make recommendations on the use of medicines that are designed to extend life, at the end of life. The new advice we are giving to our Appraisal Committees will help them to take account of this and will better enable them to decide when to recommend the use of life extending treatments.”
To be considered under this supplementary advice, a medicine would need to: be licensed for treating a patient population of less than 7,000 new patients each year; be indicated for the treatment of patients with a terminal illness who are not expected to live for more than 24 months; have sufficient evidence to indicate that it offers a substantial average extension to life compared to current treatment; have been accessed by NICE as having an incremental cost-effectiveness ratio in excess of the upper end on the range (£30,000) normally considered by NICE’s Appraisal Committees to represent a cost effective use of NHS resources; and that no alternative treatment with comparable benefits should be available through the NHS.In addition, and subject to agreement with the Department of Health, medicines recommended for use on the basis of the above criteria would be subject to an appropriately designed programme of evidence development to ensure that the anticipated survival gains are evident when used in routine practice. Dillon said the Institute had been considering for some time how to approach decisions on life extending medicines, particularly those that were expensive and for rare conditions, and “we decided to make out contribution to finding a solution to the issue of co-payments” in conjunction with the top-up review. The exact specifics of the proposal are still being worked out and are the subject of a five-week public consultation.The Institute plans to apply the supplementary advice at the next Appraisal Committee meeting in January.


Isnt this fantastic news?
Although I dont understand why we have to wait until Janurary - why cant they apply this advice right now?

__________________

Allo Allo !!

On Friday morning we left a bright sunny, but chilly, Birmingham Airport and landed an hour and a half later in the south of France in the middle of a torrential downpour.

Great.

Actually I say and hour and a half later but it was much longer than that. This was due to the fact that Ryanair have obviously lowered their employment standards to the level by where their staff are unable to count. For over an hour we sat on the runway whilst one after another of the crew counted us. Over and over again. And then checked us off against the passenger manifest. And then counted us again. Eventually they decided on a number which was roughly the same and we were allowed to take off.

Biarritz airport is tiny and really cute and it took us no time at all to walk through it and find the bus stop which would take us into town a few miles away. Except it didnt. The bus I mean. It dropped us on the edge of town which meant a good 20 minute walk for us, in the rain, to find our hotel. When we did find it, just a short distance from the sea and shops, it was lovely. Very new and modern and minimalist, not at all what I was expecting. Our room was beautiful with a flat screen TV, wet room and very comfortable beds. Which is a good job because due to certain unforseen circumstances we spent an awful lot of time in there.

We set off to explore and find dinner after borrowing an umberella - it was still raining - and found a typical French bar not far away. We had barely put the umberella down when we heard "Hello you two - you found your hotel then?" It was another couple from the plane, staying at the same hotel as us, but being wimps (or wise as I call it) had taken a taxi rather than the bus. We had a couple of drinks and as they were friendly Black Country types within half an hour we knew their life story. We spent a very nice evening in their company eating a not altogether typically French meal and then running back to the hotel in the rain which was even heavier by then.

The next morning the sky was blue, not a cloud on the horizon - a gorgeous day - so after breakfast we set off for the beach. The surf was pumping and despite there being a chilly wind it really was beautiful. Although I have to admit it was hard to recognize the 'Biarritz' we remembered from 29 years ago. Its very upmarket now, and very expensive with beer being £5 a pint and the shops being of the designer variety.

We wandered round to the old harbour and had lunch, very typically French this time. Martin had Moules and frites and I had fish soup - or at least I ate the soup but left the fish part of it. For a couple of days I hadnt been feeling 100% - I was in the 4th week of Sutent and the side effects were pretty bad - and by now I was feeling really unwell. So we returned to the hotel where I slept for most of the afternoon.

The next morning, Sunday, I felt just as bad. I had been up most of the night running to the loo and was absolutely exhausted. The rain had returned and it had become much colder and for some reason I really felt it. Even with 5 layers on I was chilled to the bone.

There isnt much to do in a wet, cold Biarritz on a Sunday so we went to the Sea Museum - which took about 15 minutes to walk around. It was worth the 7 Euros entrance fee though just to get out of the rain. After it was all I could do to stagger back to the hotel where Martin tucked me up in bed - I went to sleep and he watched the telly. I didnt feel much better that evening so we ate at a Crepe restaurant (cue Martins 'crepe' jokes) just around the corner from the hotel. It was really sweet inside, like eating in someones living room, but I really wasnt hungry and just picked at my dinner.

Monday was more of the same Im afraid - horrible weather and me feeling really ill. We ventured out for an hour to buy the kids some chocolate cakes but I was soon back in bed shivering. Since I had IL2 I seem to feel the cold much more, and it takes me ages to warm up. This cycle of Sutent has been pretty 'challenging' (as Dr P would say) and Im so glad its finished now.

All in all it was a nice break, despite my feeling so unwell.

And Martin got to watch all of the New York Marathon and the Grand Prix while I snored next to him !

Dark thoughts...

I guess we all have them - those horrible dark thoughts that keep you awake in the middle of the night. Usually you can push them to one side, ignore them and think of something nicer. But sometimes they keep creeping back in, intensifying and magnifying, making sleep impossible.

The last few nights have been particularly bad. Its always the nights isnt it? The cold light of dawn chases these thoughts away like the demons they are.

Recently my demons have consisted of thinking what it will be like for my family when Im no longer here. What will it be like for Martin going into our bedroom, opening my wardrobe and seeing the clothes I will never wear again? I cant quite imagine it, well I can - I just dont want to.

I dont want to think of my family with a big 'Jane sized' hole in it.

Maybe this is a bit self indulgent - after all, I wont be here. I have the easy part of this deal, its Martin and the children who will have to handle the fallout.

Hello Blogger !

Well here I am in my new home, Blogger. The migration process was much easier than I expected - in fact it was simple. Not too sure about the font though, but I suppose I'll get used to it. In fact Blogger has quite a few extra features, which when I have worked out how to use them, should prove very useful.

Mary, my MacMillan nurse, managed to hunt me down this week after me avoiding her for a couple of months. Its not that I dont like her, she's lovely, it's just that Im not ready for the whole MacMillan/Hospice thing yet - especially whilst Im still feeling so well. Martin has recently completed a 'carers course' at the Hospice which he says he found very useful. Mainly because he knows that the support is there, both emotional and practical, when the need should arise. Personally I think he enjoyed the home made cake and company of the nurses !
Anyway, Mary and I had a lovely chat and decided that I would contact her if and when I need her and she would phone every couple of months to make sure Im ok.
I know the time is going to come when I do need her and its comforting to know she is there, ready.

No two cycles on Sutent are the same, side effects wise, so it's no real surprise that whilst last month was easy, this month is already proving to be quite difficult. Week 2 of cycle 7 (seven already !) and my hands are falling to pieces, my mouth is sore, Im running to the loo regularly and suffering the most awful cramps. I get cramp in the strangest places - along my shins, in my hands and in my stomach and its so painful for a few moments it literally doubles me up. But it doesnt last long. And its just a side effect of the drug that is keeping me alive. However it can be a bit embarrassing when it hits me in the middle of Tescos and Im bent over the frozen food counter groaning !

One 'side effect' Im trying to ignore at the moment is the amount of weight I put on during our cruise. Despite all the exercise I put on 7 lbs - and Martin 10 lbs ! I defy anyone not to put on weight with all the fabulous food that was on offer. It will come off slowly Im sure - just in time for the next one !

I know Ive only been back from our cruise just over a week but Ive got itchy feet again. There are so many places I want to see and although the 'panic' I felt until recently to try and do everything at once has passed, I still feel the need to not waste a single moment. At the end of this month Martin and I are going to Biarritz for a long weekend. Years ago, before we married, we drove to the South of France, camped, and loved it. We have always promised ourselves we would return and now seems a really good time to go. This time, with only 4 days, we are flying there - and staying in the loveliest little French hotel. I'll be in the fourth week of Sutent then so I hope there are plenty of loos handy !

Martin is already worrying about what I may be planning next - he is running out of leave from work !

Tea and Gossip

Tia and Chris

Mike and Kath.

Once again we found ourselves very much the 'younger' set on board - by a long shot in some cases.  Shortly after leaving Messina the ship had to turn round and return so an elderly passenger who had been taken ill could be transfered to hospital.  And the following day sadly we had someone die after suffering a heart attack in one of the restaurants.  These incidents, combined with several injuries - gashed leg, broken arm -ensured the ships doctor was kept busy that week.  Fortunately I was very well all week with just minor side effects from Sutent so I didnt need to call on his services.

We made some lovely new friends - Tia and Chris - and Mike and Kath - all of them with the same great sense of humour which meant I spent an awful lot of time laughing - definitely the best medicine.  Which is more than can be said for the ships 'comedian'.  We had all looked forward to this night, a break from Bingo and Play your Cards Right, so it was a HUGE disappointment.  He was awful.  Truly truly awful.  Old stale jokes, inappropriate political comments looking for the audiences approval and constantly looking at his watch.  He wasnt the only one - I couldnt wait till his act was over either.

Towards the end of the week we received an invite to the Captains Cocktail Party !  Wow, did we feel honoured !  And spent a lot of time gloating and waving the invite under the noses of Mike and Kath - that is until the night arrived and they waltzed in too.  They had kept quiet about their invite to see our faces when they turned up !  Actually it was a really nice evening with free champagne (ok - it was Cava) and canapes and a band playing.  I even put on a long posh frock specially.

One of my favourite times in the day was 'afternoon tea'.  This consisted of home made biscuits and cakes and sandwiches and was served on the top deck.  It was a great time to get together and gossip about the days events and what had happened to other passengers.  In Naples one unfortunate couple missed the ship sailing and had to get a train to our next destination to reboard.  I dont think they set foot ashore again after that experience !

The week simply flew past and all too soon it was our last evening - except for Tia and Chris who were staying on for a second week the lucky things !  We had a fabulous week made even more special by the company of our new friends - its something I will never forget and I hope they keep in touch.

Thank you Tia, Kath, Chris and Mike - thank you for all the laughs, for your company and for the wonderful memories.

 

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Toulon and Barcelona

Toulons pretty harbour.

Despite being sandwiched between Marseille and Nice, Toulon has to be one of the prettiest and nicest French towns I have visited.  It is a million miles away from the harsh image of St. Tropez with little narrow French streets, a bustling fruit and vegetable market and a lovely harbour front lined with bars and restaurants serving typical Provencal food.

After a morning wandering around the town and buying bits and pieces from the market this is where we found ourselves for the afternoon.  Sitting in a restaurant packed with locals enjoying Sunday lunch, in the company of a couple of friends from the cruise - Tia and Chris.  Several happy hours were spent sitting in the sunshine gossiping and drinking lager (them) and water (me) before we staggered (them) back to the ship just before it sailed.

Las Ramblas in Barcelona.

Barcelona is simply huge.  There is simply so much to see and do there its just not possible in one day so we decided to investigate the Las Ramblas area of the city, and that is big enough in itself.  Its mainly a shopping area but includes the gothic quarter with some fabulous old Spanish architecture.  After a couple of hours walking around my legs were complaining again, I must have walked miles and miles, so we sat down in a lovely square and just peopled watched for an hour.  Im actually amazed, and I know Martin was too, at how far I walked all week.  I have to admit I did find it absolutely exhausting but I was so determined not to miss anything.  And my feet were fine - the 'corn' hasnt made a reappearance yet !

 

 

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Up Pompeii

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 greenand 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 probablybest 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!)

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All at sea.

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....

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....

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 !!

 

 

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Feeling good - looking even better !

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

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.....

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.....

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....

 

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".........

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)

 

 

 

 

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 !

 

 

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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' !

 

 

 

 

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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.