That little magic word....

........Cure.

Its not a word used very often in regards to advanced kidney cancer - except in the phrase 'Im sorry but there is no cure'

So when you see it in relation to any particular treatment you grab at it desperately, convinced that you WILL be the one to benefit from this 'cure'.  That all will be well.  That the nasty treatment will be worth it because you will be 'cured'.

Last night I had a hefty dose of reality.  HDInterleukin2, which seemed to offer me the hope of a cure, it seems is unsuitable for me.  For quite a few reasons.  The main one being that my cancer histopathy has changed from a Grade 2 to a Grade 4.  Which is the most aggressive and unlikely to respond to IL2.

Even in those who are suitable candidates for IL2 the 'cure' rate is only 4% - a lot less than I thought and the same as the death rate from the treatment itself.  Dr P was so kind as he explained this to me.  He said he would ask Prof Hawkins at Christies (the real expert in IL2 apparently) for his opinion, but realistically it wasnt an option.  It wouldnt work.

So....what are we left with?  Dr P said I need to start some kind of treatment urgently and advised we apply for funding for Sutent now.  Well, Monday.  Which he is going to do.  He was quite optimistic about my getting it, my PCT has already agreed to fund it in 4 cases so that bodes well.

But, ofcourse, its not a cure.  Its a stabiliser.  Which has a 63% chance of working.  And could possibly extend my life for up to 2 years.  Without any treatment at all it seems we are talking in months. 

So thats that.  No more talk of 'cures'. 

Sutent has some quite unpleasant side effects of its own, and you have to take it for the rest of your life - which means until it stops working, which apparently it does eventually.  If it works in the first place !

Can you tell Im a bit depressed about all this?.....haha

It could be much worse though.  There is a blanket ban on funding Sutent for patients in Warwick, and many other places in the UK so I should consider myself lucky I should get it as a 1st line treatment.

Im going back to see Dr P the week after next at the QE as an NHS patient - THAT will be a shock !  As kidney cancer is a rare cancer we are lumped in with his testicular cancer clinic - hopefully there is little chanceof me being confused with another patient there !  By that time the application will be in and its just a matter of waiting, and it could take up to a couple of months.  If thats the case then we have decided to pay for the first couple of courses rather than risk waiting.  The rate Im producing tumours right now I just dont have the time to wait.

The PCT (Primary Care Trust) is in fact a kind of committee.  They make business and financial decisions and can you believe not ONE of them is a Clinician??  Not ONE doctor.  And these are the people we have to depend on for funding decisions of this kind.  To be allowed funding for Sutent you have to prove you are an 'exceptional case'  Sutent is routinely prescribed in the US, all over Europe and even in countries such as Mexico and Argentina - what the hell are we playing at here in the UK?  Dr P should have been able to write me a prescription there and then last night.  Instead we have to go cap in hand, begging, to a committee of bloody business men and accountants.

The whole situation is disgusting and needs changing NOW.  Sutent is an approved and licensed drug - its not some experimental treatment.  And more to the point it is the only treatment that routinely works.  How can they deny patients access to it?

So....last night was a bit of a blow in one way, but all is not lost.  2 years may not seem very long to a lot of people but just watch how much I can cram into it !  Brazil at Xmas (which would have been unthinkable on IL2) and ofcourse back to Oz as soon as possible.  And Ive always wanted to go to China.....

 

Not as bad.....

......as I was expecting really.  As a matter of fact Mr F has done a great job and I now have a smaller, but very pert, right boob.  Im rather wishing I had asked him to do the other one while he was at it !

The day didnt have a very auspicious start though, my anaesthetist popped in for a chat pre-op and asked me which toe I was having removed !  Not exactly confidence inspiring.  We soon got it sorted out though, apparently he had me confused with an 83 year old man.  Easy mistake to make I guess?....haha

So down I went at 12 and woke up at half past 2 feeling, surprisingly, ok.  I usually feel really grotty after a GA but this time I was sitting up in recovery chatting to the nurses.  It was nice to have only one drip and one drain this time.  I was back in my room shortly after where Martin was happy as Larry watching Sky Sports.  Mr F popped in and said it all went very well and all the lumps were removed and I could go home the next day when the drain was removed.

Lovely.  Stayed on sips of water all afternoon - chucked it all up at about 6 - then just slept till the next morning.

Drain out after lunch yesterday and admired my new pert 17 year old boob !  I havnt seen the stitches yet though, it has to be kept covered for a few days.  Its a bit sore, but to be honest not as painful as when he shot it with his biopsy gun thingy.

So - on to the next thing.  Mr D came to see me, he is passing me on formally to Dr Porfiri now, the oncologist, and unless I need any more surgery I wont see him again.  Which is a shame because we have built up such a rapport over the past 7 months and I trust him.  He will definitely get a Xmas card !

Im seeing Dr P on Friday evening.  We have decided to have a private consultation and pay for it.  There are so many questions we want to ask and I dont want to be constrained by NHS time limits.  This way we can really get a 'plan' sorted.

James phoned and hes up near Brissy with Karen, our friend there.  She hasnt seen him since he was 4 but she said she recognised him straight away!  Its 28 degrees up there right now, Im SO bloody jealous !  I just know hes going to love it there and will probably stay and get a job there rather than return to Sydney.  Cant blame him.  Shes taking him to see the old house in Peregian today, I wonder if he willrecognise it?

Anyway Im going to take it easy today, after all it is still less than 48 hours since my op, and prepare myself for what Im going to hear tomorrow.  I know it isnt going to be pleasant.

 

The next step....

The lumps in my breast, all FIVE of them, are indeed metastatic RCC.  Which has caused quite a stir because this has never been heard of before.  Bloody typical of me.

They are coming out on Tuesday, shouldnt be in for too long, a few days because I will need a drain.

I heard the results of the meeting yesterday too - the bare bones of it anyway.  I now have another new doctor, an oncologist called Dr Porfini who is on Prof Nicks team , who specialises in RCC.

He has decided Im going to have Immunotherapy.  I dont know which kind exactly yet but it will most probably be HDInterleukin11.  Which is VILE stuff.  It is my only chance of any kind of remission though, albeit it a very slim one.

The thinking seems to be that Im relatively young, fit and healthy (till Dr P gets his hands on me!) and can hopefully survive the treatment, so its worth a shot.  Ive nothing to lose really, if it doesnt work I can apply for Sutent then.

So, it seems the decision is made and Im going along with it.  Ill think about it over the next few days but I really dont have a choice, yet again.

SURELY its time for me to have a wee bit of luck?

Going out for a curry and bucket of red wine tomorrow night - probably the last Ill have for a while !

 

Ouch....

Ouch Ouch OUCH !!!!

Had an unexpected thrill today - Mr F took a biopsy of the lumps (theres 2) in my boob.  He seems to have quite a sense of humour though, after telling me it may sting a bit he got this 'gun thingy' and shot it into my boob - 5 times !  But it was ok cos there was a nice nurse there to mop up the blood !  I wonder how he would feel if I shot it into his nads a few times?

Anyway, that was just the start.  Then I had to go for a mammogram - now I dont know if anyone has ever had one but they put your boob in this machine and then squeeze it flat to take the xray - just the thing I wanted after having it stabbed 5 times.  It stopped bleeding after half an hour but in the meantime ruined one of my best bras.

Going back to see Mr F on Saturday morning for biopsy results, but whatever they are, and we are all 99% sure its rcc mets, they are coming out next Tuesday.  I should be in for a couple of days.  Honestly I think they will be naming a wing after me at that hospital soon !

The MDC meeting is on Friday so I have a whole day off tomorrow...think Ill slob around in my jim jams all day!

 

The Barstewards.....

Found out this afternoon that the Police health scheme wont pay for my Sutent.  They exclude chemotherapy in their policy and even when I pointed out Sutent isnt chemo they said that as it was 'chemical oncological treatment' it was still excluded.

Bummer

All other treatment I need, lump removal, scans etc I can still have in the rarified air of The Priory so I still feel pretty lucky.

So now Im busy gathering all the evidence required for an application for funding to my PCT, South Birmingham.  Luckily I have a few very experienced contacts who have been through this all before and know the 'drill'  The stronger your case to start with the less likely you are to be refused.  However, South B'ham PCT have yet to be tested so we cant anticipate their reaction.  I have my MP, GP, several Councillors and ofcourse Prof Nick and Mr D in my corner.  Plus loads of clinical evidence of the 'cost effectiveness' of Sutent.  A formidable team I think.

We shall see.

They certainly wont know whats hit them media wise if they refuse me !

As you can see from the above Ive decided, as long as Prof Nick agrees, to go for Sutent.  A clinical trial is just too much of a risk, Im feeling too well at the moment and want to stay like this for as long as possible.  Sutent is a trial of its own anyway.  No one knows how long you can survive with this drug, its so new.  So who knows? I may be breaking new grounds and shattering statistics anyway.  And all with half a boob!

Off to see Mr F tomorrow about my lumpy boob.

I wonder if he will pop a couple of implants in while hes at it....I could go in looking like Kate Moss and come out like Jordan !

 

Thank you....

.....to my new friends online for their kind words and support.

When I first started writing this Blog it really was for me only, an outlet, and maybe to show my children when the time comes that having an illness like this isnt all bad.  There are so many positives to be gained from it.

Death seems to still be the final taboo doesnt it?  Its a subject avoided by most people, especially when talking about someone still alive.  But you know it IS something that will happen to all of us eventually.  Most of us dont even give it a minutes thought until someone close to us dies, then we become aware of our own mortality for a short time - until we push it to the back of our minds again.  Thats the best way to be, for how can you live if you are so conciously aware of the fact you will die?

Right now Im focussing on the next few months.  Its very easy to go along with everything the doctors advise....'we can do this...we can do that' But the question really should be 'SHOULD you do that?'

Like I said, Im well right now.  So basically I have 3 choices.

1.  I go for the 'easy' option.  Sutent.  Which will hopefully extend my life but at what price?  Nasty side effects and the constant worry of whether it will work and if it does for how long?

2. I take a gamble and go for Inteferon or Intaleukin2...or even more risky a clinical trial.  Both kinds of chemo but with a very small chance of a cure (4%)  Im well enough to withstand the treatment but it virtually takes you to the very edge of death its that severe.

3. Tell them all to sod off and spend the next few months partying, drinking red wine and smoking and eating all kinds of rubbish and then leave with a smile on my face when I decide.....oh yes, ending it all MY way and when I want to is certainly an option.

Difficult isnt it?  Its a basic human instinct to hang on to life for as long as possible, to fight to live, but at what cost to those who love you?  Ive seen to many patients fade away in hospital, day after day of their families visiting, looking for signs of hope, unable to accept the inevitable.

Maybe its the greatest gift I can give Martin and my children - that they dont have to watch that happen to me?

 

The clock is now ticking....

....officially.

I had my histology results this morning.  And it was bad news.  Metastatic RCC.

Poor Mr D, I felt so sorry for him.  His face crumpled when he saw I was alone and when he asked where Martin was I knew it was bad news.  He had a look and prod of the lump that has now appeared in my right breast and said that is almost certainly metastatic RCC too.  The only good news is that these soft tissue tumours can be removed, so Im off to see yet another consultant on Wednesday about having this one out.

My poor body, its been mutilated enough recently I thought and was going to refuse any futher ops but Mr D pointed out it would just get bigger - and best to have it out now.

The wheels have been set well and truly in motion now - Prof James and his team will be prescribing me Sutent, probably next week.  That will be interesting.  Will the Police scheme pay for it or will I be chaining myself to the rails outside Downing Street having been refused it by the NHS?

The really annoying part is that in myself Im feeling quite well, better in fact than I have for some time.  Although Sutent isn't chemo as such it does have some very unpleasant side effects and makes you feel like shite.  But the fact that Im 'well' to start with is a really good thing, so Im told !

It feels strange sitting here writing this, I havnt told anyone at all yet.  Martin wont be back till about 6 so Im all alone till the kids get back at 4ish.

As I said...the clock is well and truly ticking now and the only thing I have to beat is the statistics, which make very grim reading,...which I am very determined to do. Ive still got loads of stuff I want to do, and having half a boob isnt going to stop me !

 

Cautiously optimisitc....

Well, I saw Dr M (Scan man) on Friday evening and he did an ultra sound on my liver and pronounced it A Ok !!  Just a couple of small cysts which are nothing to worry about apparently.

The lymph node by my lung is still causing concern though.  Apparently kidney tumours have a very rich blood supply, and the contrast used during a CT scan makes them light up like a light bulb.  And this one did.  Mr D and Dr M are showing my scans etc to Prof Nick (an Onc specialist) to see what he thinks.  Im collecting consultants like some people collect stamps !

Had the 'hump' removed from my back today.  Mr D and I decided to opt for a local anaesthetic - BIG mistake.  It was bigger and deeper than he thought and I had to endure an hour of him digging away to get it out.  Not to be recommended.  He did say it didnt seem to have a rich blood supply so Im hoping this is a good sign.  Its gone off for histology and I will hear in 10 days what exactly it was.

Anyway Im home, and it is really painful - really really painful but Im feeling quite optimistic.  I feel well (apart from the hole in my back now!)

James called a short while ago to say he had arrived in Sydney safely and met up with his mates.  We could tell because we could hear the racous drunken laughter in the background - so he is ok !!  Nice to hear that its cold and raining over there right now...haha

 

 

Bad news....and a bit more bad news !

I went to see Mr D last evening for my results.  I really really hoped I would get a definitive answer but it seems its not to be just yet.

Basically, my bones scan was ok.  No sign of any cancer, just a bit of arthritis in my right hip and left knee !

But my CT was a different story.  It was reported by a different radiologist, usually Dr M (Scan man) does it.  I think he was on holiday this week.  Anyway it was very non commital, but still said enough to worry Mr D and me.  I have an enlarged lymph node (about 4cm which IS big) on my left lung.  Plus 'multiple lesions' on my liver which could, or could not be, cysts or mets.  Very helpful.  Sit on the fence why dont you?

Anyway, Mr D has arranged for Dr M to both do an ultra sound on my liver on Monday afternoon and also review the scans - so we should get some answers then.

Hes also going to operate and remove the lump on my spine, which we are still not sure what it is.  Best thing is to get it off and send it for histology.  This will be on Thursday.  So I have another bumper fun week ahead of me !

How do I feel?......well a bit worried still.  'Multiple lesions' doesnt sound good in anyones book.  Mr D said they could be, and are most likely 'early changes'.....ie early metastatic disease.

Martin and I went for a curry after to chat and settle down before we went home.  And I drank most of a bottle of red wine just to teach my liver a lesson !