Hot and Holy

We have just returned from visiting the Vatican.  In a fit of independance and adventure we decided to go it alone - and not on an excursion (plus they are SO expensive.  They were charging 36 quid for a coach into Rome - we paid 9 Euros each on the train.)  Now Rome is a busy city and the Vatican even moreso and St Peters square was absolutely heaving with people - all queueing up in the mid day sun to get into the Basilica. One of the reasons for the long queues is the airport style security system there.   Caroline had a little swoon (it was really hot) and had to sit down for a bit, but eventually we got in - and it was SO worth it.

I really couldnt do justice to it in words - so Ill post some pics when we get home.  It really was amazing though.  Its HUGE with little chapels off the side where you can sit and pray and monuments to all the past Popes everywhere.  The main altar is absolutely spectacular with a stained glass window of a dove at the back.  We both came out with our necks aching from staring up at the ceiling with its ornate gilt work and painting.

I even managed to splash a little holy water on Caroline, the heathen !

I dont think the Pope was in today, but we waved up at his windows just in case - which surprised a couple of the Vatican Guards - although how can you take a soldier seriously when hes dressed up like a medieval jester complete with stripey tights?

As I may have mentioned before - it was hot.  38 degrees.  And we were starting to wilt so we had a potter around admiring the architecture, and then caught the train back - which takes about an hour.

Sardinia was the same yesterday - very hot. We spent a couple of hours wandering around the shops there and then scuttled back to our air conditioned cabins.  Its a very beautiful island as we saw when the ship left yesterday evening - sitting on the Poop Deck, drink in hand !

We are starting to get into the spirit of things with the evenings entertainment now.  In fact a couple of 'spirits' is all it needs and out come the Bingo cards and Im shouting out about fat ladies like the best of them.  I blame Maza and Barb.  They are such bad influences on us.  I bet by the end of the week Ill be dressing up and doing the conga around the pool.  Thats if I can find a dress to fit by then. 

The food is delicious and it just keeps on coming - meal after meal after meal.  Then sandwiches and cake when its not an 'official' meal time.  We ARE trying to eat healthily - honest - but again we are led astray by other passengers - straight to the desserts.

Tomorrow is La Spezia.

Did I mention its a Naval Base?..........haha !

 

New friends.

Were here !  On the ship, right now, gently rolling from side to side.  The sea is like a mill pond but Caroline is complaining of feeling queasy - she will never make a salty sea dog Ive decided.

The, very early, flight went smoothly and we soon landed at Palma airport to be gathered into the very efficent arms of the cruise company.  It was great - they tag your bags and take them away and the next time you see them is in your cabin.  Then then take your picture, give you a swipe card thingy and you are off to the ship.

Ofcourse Caroline and I, being cruise 'virgins' had slightly confused and baffled looks on our faces most of the time.  This was spotted by a couple of sweet old ladies who homed in on us and took us under their wings.  This being their 8th cruise they are experts and they were soon giving us the low down on life aboard ship.

So now, Marion and Barbara, with a combined age of about 287, are our new best mates.  They popped up everywhere we went yesterday, Im slightly concerned they may be stalking us !  haha..

Our cabin, I have to say, is bigger than I was expecting.  Plenty of storage, a nice bathroom, and even a dressing table.  And the beds are quite comfy.  We dont have a window or port hole but its air conditioned and has a telly and telephone.

By the time we had unpacked - put our bikinis on and smothered Caroline in white emulsion (she is very pale) it was lunch time.  Killing two birds with one stone we went and ate on the top deck, there are 10, in the sunshine.  Boy it was hot.  Ofcourse we were still in port in Palma then with little breeze. 

Off to the Poop Deck, which we found very easily, for some sun bathing.  There must be something about us that attracts elderly people I think because we hadnt been lying there for more than 5 mins when a nice old chap stood next to us and announced 'I was conscripted at 18 you know?'  So then we had half an hour of 'Navy' chat and another new best friend.  Thats Maz, Barbs and Perce now.  I guess its not really surprising beacuse the average age on here must be about 60 - and with all the attendant wheelchairs, zimmers and walking sticks I feel positively glowing with health !

A couple of hours of sun is quite enough for the first day so we went off to properly explore the ship - all 10 decks of it.  There is a lift but there is usually a queue of zimmer frames waiting for it so we used the stairs - we're gong to be so fit by the end of this week !  Needless to say we got lost - several times - but we are kind of getting the hang of it now. 

We tried another restaurant, there are 3, for dinner and the food is lovely - loads of it and a huge selection.  Alcohol is expensive though so when we go ashore tomorrow we are going to smuggle a bottle of scotch back on board - thats for Caroline ofcourse because I hardly drink <koff!>

At 9pm the nightlife kicked off - it was all a bit 'Hi de Hi' for us to be honest so we ducked out of that, had a couple of drinks, and an early night !  What lightweights huh?  I bet Maz, Barbs and Perce were boogying into the small hours !

Today is spent at sea - with a packed line up of entertainment including a seminar on 'Napkin Folding'.....so thats another days sunbathing for us it appears !

 

Anchors Aweigh !

Putting aside the disappointment of last weeks results, for in reality what difference do they make to me right now?  I still feel the same.  I still look the same.  And on Tuesday Im going on my cruise !!

Caroline came round yesterday morning and we were filling out our embarkation forms and generally getting all excited and giggly about it.  Its been years since we went on holiday together - without some or all of our 6 children anyway.

We fly to Palma very early on Tuesday morning and join the ship there.  It doesnt set sail till 9pm so we shall have all day to explore, or laze by the pool, or find all the bars - in fact anything we want to do.  Which is the best thing about this cruise.  You can do as much or as little as you want, more or less whenever you want.  One of the restaurants is open 24 hours a day and there are bars and a theatre and a disco and casino and a health spa and shops.....put it this way, I dont think we will be bored !

Wednesday morning we will wake up in port in Sardinia, somewhere Ive always wanted to go as it looks such a beautiful island.

Thursday and we arrive in Rome.  I dont think one day is anywhere enough time to explore the city thoroughly - were going to avoid the organised tours and just potter round on our own at our own pace....and see as much as we can.  Oh, and do some shopping ofcourse !

Friday and its northern Italy, La Spezia.  Dr P is Italian and I asked what was there when I saw him.  Apparently there is a large Naval Base there.......

Hmmmm....Italian men in uniforms !!  It doesnt get much better than that does it?  haha !

Saturday and we pitch up in Nice where all the rich men with big yachts hang out...and more shops naturally.

Then we have a day at sea to recover (phew) and on Monday arrive in Mahon, Menorca, for the day.  Overnight we sail back to Palma and fly home on Tuesday morning.  Gosh Im exhausted just thinking about all of that !

So its Spain, Italy and France all in one week - all the food we can eat and quite possibly an awful lot of alcohol too !

What more could you want?

 

Mixed response.

Thursday is testicles and prostates day - so ofcourse the clinic was packed.  In fact it was pandemonium when I arrived at 11am.  There was a sign flashing informing us that Dr Ps clinic was already running 45 mins late.

Again I was the only woman there, apart from the wives accompanying the various testicles and prostates.

First things first - a blood test.  The nurse, who I know fairly well by now - she has struggled with my veins on numerous ocassions - took one look at the puncture wounds on my arms and hands and said 'What prat did this?' in her glorious South African accent - which made me burst out laughing.  Within 2 minutes and at the first attempt she had a needle in a tiny vein in my hand and was filling the vials.  What a star she is.

Then we settled down to wait....and wait and wait.  Its not Dr Ps fault.  The appointments get filled so quickly and anyone on Chemo or Sutent is classed as a 'Walk In' - ie... they have to be seen that day so are put on the end of the very long list.

Eventually we were called in.  To be told by Dr P that my CT scan results wernt on the computer yet as his secretary was off sick.  And I burst into tears.  I had built myself up for this moment, worried myself sick over the past few days, so it was all a bit much to be told the results wernt there.  Dr P said not to worry, he would get them faxed through if we didnt mind waiting.  So sniffling and grasping a handful of tissues given to me by a kind male nurse we returned to wait yet again.

It was about an hour later we were called back in.

Its funny how you can tell by the look on a doctors face whether your results are good or bad before they say a word.  And mine wernt good.  A couple of my tumours had shrunk slightly.  Others were more or less the same.  But the big ones, the lymph node in my armpit and the one next to my breast, have grown.  Considerably.  By about 1.5cm which is a lot.

How bloody typical of me.  Its like IL2 all over again.  A partial response.  Or a 'mixed response' as the report said in conclusion.  And thats simply not good enough.

I have to admit it came as a complete bombshell.  I was quietly confident that Sutent was working well judging by the lump next to my nose, now gone, and the lump on my head, a bit smaller.  But ofcourse these tumours arnt the ones that will eventually kill me, they arnt really important in the scheme of things.

So now what?

What options do I have left?

I can stay on Sutent and have just a weeks break, due to the agressiveness of my disease now, between cycles.  Give it another month and see how things go.

I could have radiotherapy on the tumours under my armpit - but kidney cancer rarely responds to it and it can make you pretty ill.

Or I could try a drug called Nexavar - it doesnt have such a good overall sucess rate as Sutent - I would have to apply for funding for it - and the side effects are generally worse.

We discussed it at length with Dr P. and because Im still generally 'well' Im sticking with Sutent for the time being.  For another month at least.  But if by then there arnt any signs of either stability (no growth) or shrinkage I will have to be taken off it.  I wont get further funding.  Which makes perfect sense, its an expensive drug and if its not working theres no point in funding it.

So how do I feel?

Pretty pissed off to be honest !

Dreadfully disappointed.

And more than a little frightened now it seems time really is short for me.  Im not scared of dying, thats been on the cards for a long time now.  But I am scared of my disease suddenly 'taking over' and the downward spiral that will follow.  Right now I still feel as if Im in charge - but for how much longer?

 

Shit.......

........am I allowed to say that on my Blog?

Because I was saying that very frequently on Monday afternoon.

As we all know I have no veins left after my IL2 treatment.  Well obviously I do have them but they are small and deep and for the purposes of getting a needle into them I only really have two small ones left - one on the top of each hand.

I informed the doctor of this when he came to cannulate me prior to my CT scan.  And he promptly ignored me and started stabbing my left arm.  I repeated it and even showed him the small veins on my hands - he ignored me yet again and turned to my right arm.  He then turned to the nurse and said this patient has 'difficult' veins.

Hello???

Remember me?  the patient??  who actually KNOWS about her veins and has just told you ?

Then (and this is where the 'shit' comes in) he tried the inside of my wrist - possibly the most painful place to have a needle inserted.  By this time I was getting really cross as you can imagine and practically shoved my hand in his face and said 'Try there!'

So finally he did - but made a mess of that and only managed to get a tiny pink venflon in which is really too thin to take the contrast which is injected.  And that means when it is injected it REALLY hurts.

7 stab wounds later, and a badly bruised left hand, finally the CT was finished.

There are idiots in this world and unfortunately some of them are doctors - and I was unlucky enough to meet up with one on Monday.....

 

Thursday.......

Day 27 of 2nd cycle.  Almost finished.  And it hasnt been too bad really, a few rough days but generally quite tolerable.  And this is the week when I will find out if Sutent is working.  CT scan tomorrow and results on Thursday.  Im starting to get nervous I must admit.  The outward signs are good but its the scan results that really matter.  This evening I have to drink a litre of 'contrast', nasty vile stomach churning stuff - which seems such a good idea at this stage of the cycle when nausea is as its worst !  I just hope I can keep it down.

And then the all important results.  Its no good trying to second guess them, but I do naturally !  My skin lesions are definitely smaller.  No pain at all under my armpit since I started this second cycle.  But its whats happening inside that matters.  And I wont know that till Thursday.

Ive tried to keep myself as busy as I can this week to keep my mind off it.  Last Sunday, when the weather was so gorgeous, we took ourselves off to Woolocombe for the day.  Its a long drive but we got up early, with the kids moaning, and were down there before 10am.  And it was worth it.  We spent the day on the beach just sun bathing and paddling - doing the things we used to when the kids were little and we had so many happy holidays down there.  An early dinner and we were back home by 10pm - all a bit sun burnt and very tired but it was SO worth it.

Ive done a bit of shopping for my cruise ofcourse - well, I needed some new dresses for the Captains table didnt I?  And shoes......and bikinis.....and a new BIG suitcase to take it all in !

I think Im just about ready now and starting to get excited - but it wont be until after Thursday that I shall get REALLY excited......

 

 

Memories........

Edward and Catherine                                                                    James

 

Its almost 17 months since I was diagnosed.  I dont usually take a lot of notice of statistics, especially when they are depressing, but this is one time Im happy to say Im beating them - well and truly.  I really shouldnt be here.

I try not to dwell on that fact too often, but yesterday I was watching the news of yet another KC patient fighting for funding for Sutent and it was stated that without treatment a patient with mRcc (advanced kidney cancer) has only a few months to live.  Ofcourse I knew this, but to have it publically announced was a bit of a shock.

For a while now I have been thinking about making 'Memory Boxes' for the children and Im going to make a start on them this week.  Ofcourse being in their teens, and older, they will have well established memories of me anyway, so these will consist of stories of when they were born, when they were babies.  Photos and the odd bits and pieces Ive kept over the years - the silly things that we Mums collect, cards and letters for future birthdays/special days, and little gifts.

Ive put off doing this until now because I find it incredibly upsetting just to think about it, but this is such a wonderful opportunity, Im so lucky to have it and I really must make the most of it.

How many parents get the chance to actually sit down and write to their children and tell them how much they love them, to describe the day that they were born and how special they are each in their own way?

At the end of the day memories are all we leave behind but they can help to shape the future and its important they should be positive, happy ones. 

So today I shall make a start, knowing full well Ill be crying buckets whilst I do it - but hoping Im creating some smiles for the future.

 

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