Tuesday, 30 September 2008

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 !!



Sunday, 28 September 2008

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 !


Friday, 19 September 2008


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.


Thursday, 18 September 2008

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.


Thursday, 11 September 2008


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 !!


Thursday, 4 September 2008

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.