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 !

 

Fun Day Out...

Oh yes, you can keep your Alton Towers and Drayton Manor - Ive discovered a much more exciting way of spending the day.

9am turn up at hospital, be met by a charming, but VERY camp, young doctor who proceeded to inject me with this nasty stinging stuff (isotope something) and announce 'youre now mildly radio active so dont go holding any small children or babies'

See ?....you dont get that on Apocolypse do you?

The scan followed which wasnt that bad - except he put a cd player on and it was Barbara Striesand !!

Then it was upstairs to drink a litre of vile contrast that tastes like Castrol GT5, another injection that makes you feel like youre weeing yourself, and yet more scans.

Honestly, Im lucky they dont charge me for all this fun and excitement!

Anyway, all done now and results this evening....

 

James

James is off to Oz next week.  For 6 months or even longer.  Im pleased for him really I am.  I encouraged him to go, it really is the best thing for him right now but oh my goodness will I miss him.

I will miss his smelly socks left lying in the living room, his muddy football kit on the kitchen floor, the delightful way he leaves wet towels on the bathroom floor and his pigsty of a bedroom.

But most of all I shall miss the way he comes into my bedroom when Ive had a bad day, plonks himself on the bed, and says 'Fancy a coffee Mum?' and he sits and chats about his night out/work/girl friend problems.

Im trying so hard to quell the little voice inside me thats saying 'this could be the last time you see him'...but its still there.  And I cant let him see that. So I shall stand there waving him off  at the airport with a big smile on my face, and then bawl my eyes out all the way home !

 

Update on the hump...

Saw Mr D the other evening regarding the hump and a few other niggling problems.

He had a bit of a poke and prod at it, was very non commital about what it could be as I expected, then ordered a battery of tests.  A full bone scan.  Spiral CT scan. Full bloods etc.  Seems he doesnt think its innocuous either.  So next Thursday I shall be spending all day in hospital being injected and scanned - oh joy!  At least we should have some answers though.

He did say however that he thought it should be 'whipped out'.  Not sure how I feel about this really, spinal surgery sounds just a wee bit scary.  Martin, ever sensible, said to just wait and see what the results are before getting all worked about it.....

So...more waiting.....