Back down to earth....

So, this morning I saw Dr. P.

And then I bought the pyjamas.

I think I knew really, deep down.  I think I knew it was a mistake to be seduced by the idea that I had 'cured myself'.

I bounced into his room, accompanied by a nurse, Marie, who I happen to know.  I told him how well I felt, and what had happened, and how my horn had disappeared.  He just smiled and said 'Yes, kidney cancer does that, its very unpredictable.  But it will come back.  You are a grade 4 aggressive.  It will come back'

I suggested a CT and he just said 'Yes, you will need one before you start IL2'

I had a blood test - and he just smiled in that lovely kind way he has and said 'Prof Hawkins will be in touch very soon.  They have the 'blocks' of your tumour now and are producing the markers.'

So I went to town and bought the pyjamas.  And cried all the way home.

 

 

Her name was Lola...she was a showgirl....

For the first time Im allowing myself to think about our holiday to Brazil at Xmas - and get excited about it.  Im just hoping against hope it isnt snatched away from me at the last moment.

My brother, Matt,  has lived in Rio for the past 6 years, having married a lovely girl called Ana.  Shes a native SA and it was only 2 generations ago that her family lived in the rain forest.  Thats some antecedents isnt it?  They now have a gorgeous little boy called Luke who Im dying to meet.

Ana also has this huge extended family and we will be staying with one or another of them most of the time.  It sounds as if our time there has already been planned out, Xmas Day with her parents and ofcourse New Years Eve on Cococabana - which is supposed to be quite a spectacle.  A bit like Carnival - all fireworks and samba-ing.

Were also staying for a few nights at an eco-lodge - in the Amazon but right on the beach too - it looks like paradise.

Pousada Naturalia - Ilha Grande - Angra dos Reis - Rio de Janeiro - Brasil

It looks amazing doesnt it?  But I bet the spiders are HUGE !!

So Im starting to get excited about it - tentatively !  The tickets are all booked and paid for and we are due to fly out on 18th Dec.

Im still feeling well, the horn has disappeared completely, and Ive been reading up on foods that boost your immune system.  If this IS my immune system kicking it I want to feed it as well as I can.  So its Kiwi fruit and Avocado (not together obviously!) for me!

Dr P on Tuesday - I cant wait to hear what he says.......

 

 

The 'R' word.

Ive resisted writing this because to be honest Im scared of tempting providence.

But, as this is a comprehensive account of my illness - and it is 'mine', everyone is different, I have to really.

Something very strange is happening.  Last Friday, all of a sudden, I felt incredibly well.  Just like flicking a switch.  I felt, well 'normal'.  No aches, no pains no 'grotty under the weather' feeling.

Then on Saturday that wonderful monthly experience we women have returned.  An event in itself because I had been told their absence was due to my being so ill.

At the same time I noticed my 'horn' was shrinking - at first I thought I was imagining it or it was wishful thinking, but its the size of a pea now - hardly noticable.

Anyway, I mentioned it to a couple of friends who have a lot more experience than I do in KC and they both mentioned the 'R' word - Remission.  Apparently even though it is a very rare occurance there are well documented accounts of spontaneous remission from advanced KC.  Sometimes only temporary, occasionally complete.

Im trying not to think about it - but I still feel really well. 

I havnt heard the final results from Manchester yet and Im due to see Dr P next Tues so it will be interesting to hear his take on this.  I think I need another CT.  I really dont want to start any treatment until I know exactly whats going on.

I dont make things easy for myself do I ?

Ps...I havnt bought the pyjamas yet

Catherine and Grace

Still waiting.....

Ive been sat next to the phone for 3 days now - willing it to ring.  Nothing so far.  Prof H. did say I would hear by 'Monday'.  I hope so.  I have a lot of things to organise before I surrender myself to the tender mercies of IL2.

I need some new nightwear.  I dont normally wear anything in bed, not even Chanel No.5.  Sometimes maybe a squirt of Body Shop stuff if I think Im on a promise.  So I must buy some decent pyjamas.  NOT nighties.  How many times when Ive been nursing have I had a flash of somones 'fluffy' as they turn over in bed, thanks to their nightie.  Plus the nurses will need to have access to my PIC line, and in a nightie they would have to hoike it up around my neck.  I shall buy short pyjamas.  Half a dozen pairs.  Although at the end of the day Ill be feeling so grotty I dont suppose I shall care if Im lying there stark bollock naked - but the nurses might...haha

This is a very strange position to find yourself in.  Sitting here, feeling GOOD today, and yet desperately hoping for a call, the end results of which will make me so terribly ill.  Or maybe even kill me.  There is still that 4% chance that the treatment can prove fatal.  Id be very pissed off if that happened and I hadnt worn all my pyjamas.

 

What a day....

So, yesterday we went to see Prof Hawkins at Christies in Manchester.  And got there an hour early as I had 'Lewis Hamilton' driving.  Better to be early than late though I guess.  Christies is quite a small hospital really, it specialises in cancer only.  Its quite modern and clean and has a nice little coffee shop in the entrance.

Anyway, I booked in at the Derek Crowther Unit (I wondered if he was a relation of Leslie) went and had some bloods taken and was shown into the 'Relaxation Room'.  Now I know a lot of patients love these rooms - all pinky/purple lighting, comfy sofas and whale song piped in - but personally I HATE them.  I must have stayed in there about 20 seconds, then, dragging Martin behind me made for the normality of the coffee shop.

We had a coffee, read the paper, and went back to wait to see Prof H....and waited.....and waited.  He was in a meeting.  2 hours later we got to see him.

Then we had a shock.  Apparently I AM eminently suitable for HD IL2.  And this is what he is offering me, in fact strongly encouraging me to have.  Im young (hurrah), have an excellent performance status, small tumour volume (the grading doesnt matter after all) and have the right 'type' of tumour.  He is just waiting for one final result but he is very confident that HD IL2 will give me a 'very good chance'.

Well......we were both a bit shell shocked to be honest.  He also used that little magic word 'cure' - twice.  Im so wary of getting my hopes up yet again, but to be honest I cant help it.  The chances of my responding to HD IL2 are approx 20%

20% !!!!

Thats mainly because he thinks I can withstand the dreadful treatment well.  20% may not sound brilliant odds to anyone else but to me they are fantastic !

The treatment is pretty harrowing.  And I will have to go to Manchester to have it, away from Martin and the kids.  Its so toxic that you have to be in ITU and very closely monitored.  I shall be in for 6 - 8 days at a time during which I have IL2 every 8 hours up to a maximum of 14 doses.  But most patients only manage about 8 doses before their body cant take any more.  Then you have a couple of days to recover and then go home for a week.  Then back in again for another 6 - 8 days.

Then you have a couple of months off to recover, have a CT scan, and start all over again up to a maximum of 5 courses - so thats just over a year.

The side effects are horrific so Im not going into them here and now.  Prof H. says Im not allowed to look at the monitors while Im being treated because as an ex nurse it will scare me to death!

I shall ban Martin and the kids visiting - I dont think Ill be up to visitors anyway and I really dont want them seeing me so ill. 

So...Im just waiting for a phone call from him - with everything crossed.

 

 

Normal people....

On Sunday we had a lovely day out.  We went to a christening, and mixed with 'normal people'.  By that I mean people who were unaware of my illness so for a few hours I could almost forget about it.  Almost.  When you are first diagnosed with cancer everything changes, it completely colours your world.  So its such a nice change to 'take a break' from it.

It was great to dress up, put a frock on and wear high heels - although its been a while since I wore them, Im sure I was walking like Dick Emery !

The overall effect was good though and I had lots of people, who I havnt seen for ages, tell me how well I looked.  Which just goes to show doesnt it?  You can be seriously ill and yet look healthy and well on the outside.  So I just smiled at everyone and said "Yes Im well thanks" when people asked.  To be honest only family and close friends know anyway and maybe a christening isnt the best place to announce I have a terminal illness!

One positive aspect to come out of this is that our family, Martin, me and kids, have become so much stronger.  We always were a close family, but now we seem really united.  Not just them looking after me, but all of us looking after each other.  The kids especially.  They still bicker occassionally but its as if they recognise what the other is feeling, and react accordingly.  Just little things, like making each other drinks, choosing which film to watch without arguing, Catherine helping Edward with his homework - its nice to see.  Its comforting.

I miss James dreadfully.  The house seems so big and quiet without him.  He calls regularly, every few days, and tells us what a brilliant time hes having.  I have a feeling he is checking up on me too, without saying as much.  Ive told him the bare bones of whats happening right now but keep it very light hearted.  Hes doing exactly what he should be doing, getting on with life.  Hes still staying with Karen near Brisbane right now but plans on moving up to Rockhampton and meeting up with his mates soon.

So today is the big day.  Im off to see Prof H.  Im trying not to get my hopes uptoo much.  I need to get my 'horn' removed as soon as possible, its starting to hurt now and its getting quite big.  Martin jokes and says he could hang his jacket on it !  Talking of lumps, which I seem to very regularly, Im growing yet another new one.  Just under my right breast near where I had the 5 removed a few weeks ago.  Im growing a 3rd boob! 

Id like to see M&S fit me with a bra when it gets a bit bigger!....haha !

 

 

Quandry....

So, yesterday I woke up feeling much better.  They grey skies had lifted (figuratively and literally) and I was feeling in a much more positive frame of mind.

Then I had a phone call from Professor Hawkins' (One of the top blokes in the country on RCC) secretary.  And he wants to see me next Tuesday at Christies Hosp in Manchester.  I know Dr P sent him my histopathy for his opinion but I really didnt expect to go and see him.  So ofcourse now my mind is working away 19 to the dozen wondering what on earth he is going to say.  Surely he wouldnt ask to see me simply to say 'IL2 wont work - stick with Sutent'?

All this uncertainty is so stressful.  I had just settled down and now it seems Im being tugged off in yet another direction.  Its exhausting.  To be honest Im getting fed up with it, if I only have a few months left I dont want to spend them charging all over the country seeing different consultants.  And I certainly dont want my hopes raised, yet again, only to have them dashed later.

Poor Martin, Im sure he is fed up of it too - although he would never say so.  Ive tried asking him how he feels, or if he has any questions, and he simply says 'If you are happy then I am'.  And I really believe that.

Ps.....Ive just checked the Christies Hospital website.  And the Unit I have to see Prof Hawkins in is a designated clinical trials unit.  So I guess I know why he wants to see me now.

 

Grey skies...Grey day....

Im having a bleak day.  I dont have them very often, but today is bad.

I saw Dr P this morning at the Cancer Centre at the QE.  What a scary place.  Its huge, there must have been over a hundred people in there waiting.  So many cubicles and waiting rooms and treatment rooms.  I must have looked like a terrified wide eyed rabbit when i went in because the receptionist was so kind and kept telling me not to worry. 

This is the reality of having cancer.  Sitting and waiting with so many other people, some looking so ill, others looking like me ,quite well.  Numbers being called out.  Wheelchairs and stretchers awaiting their patient.  A 'Koffee Korner' where a couple of ladies with kind friendly faces make drinks.  'The Patrick Room' where all kinds of info can be found, and MacMillan nurses offer help and support.  Im not ready for that yet.  I scowl at them, daring them to approach me.  They dont !

Dr P is such a gentleman.  He had his Registrar with him this morning, she looks about 18.  I guess that means Im getting old.

Dr P submitted my application for Sutent last week.  With 'URGENT' stamped all over it.  He fully expects them to get back to him this week asking for further information and intends to reply immediately and 'set a fire under them' in regard to accelerating the process.  He is still very confident I should get it.  My 'horn' has grown significantly and needs removing.  But my need for Sutent is even more urgent.  Im going back in 2 weeks to see him and I need to start taking it then - one way or another.

So...being positive (or really really trying to be!) I have a week off next week.  Im thinking of going away for a few days on my own.  Just to write and 'be'.  Its a mere 7 months since I was diagnosed and I really havnt had time to catch my breath since then, its just been one thing after another.

Sorry for the gloomy entry today - I promise to perk up tomorrow x

 

Political prominance......

So, at last the appalling state of affairs that exists with the NHS that is the 'post code' lottery for funding some cancer drugs has achieved political prominance, by BOTH major parties.

About pigging time.

Jane Tomlinson, possibly the most well known cancer sufferer due to her fund raising during her illness, chose to die early, rather than use her 'fame' to get the drug which would have extended her life.  What an amazing woman.

Andrew Lansley, Shadow Health Secretary, spoke at length at the party conference in Blackpool on this very subject.  And now Gordon has jumped on the band wagon and promised to put and end to this inequity in what is supposed to be a NATIONAL Health Service.

Im very impressed with my own MP, Richard Burden.  Ive written to him on a couple of occassions and received very prompt posivite replies.  He has offered his support if I am refused funding, to write on my behalf to the PCT.  He also enclosed a copy of the PCTs 'exceptional case' policy, which ofcourse I already have, but it shows hes on the ball.

Ofcourse, interweaved in all this, family life carries on pretty much as normal.  It has to.  Its the only thing that keeps me sane at times.  Worrying about Eds PE kit, running out of toilet roll and bickering about what to watch on telly tonight keeps my mind occupied so theres little time for self pity.  Im lucky really in that I dont get an awful lot of 'pain' as such, its more discomfort really which can be easily dealt with by taking a couple of paracetomols and cleaning the bathroom!  Its true what they say, laughter and distraction really IS the best medicine.

Ive been checking up on the side effects of Sutent.  Pretty much the 'usual suspects' of nausea, vomiting etc... Sore mouth hands and feet, Ive bought some Aloe Vera toothpaste and special moisturiser ready (optimistic arnt I?...haha)  and the really weird one of making your skin go a greeny/grey !!.....Oh No !! I shall be turning into E.T. !

Well Im NOT having that.  I shall invest in a bucket of fake tan and look like Dale Winton instead !

 

 

Goat woman

My daughter, Catherine, has just started in the 6th Form.  And taken over by the sounds of it.  She has joined the Student Council and informed them that this year they will be supporting the James Whale Fund as their charity.  Which is no mean feat when you consider its a very strict Catholic school and usually sticks to Father Hudson Homes etc...  Mind you, I wouldnt take on the feisty little red head either - she can be VERY determined when she wants !

Something very peculiar is happening to me right now.  Im growing a horn !  Yes, a lump on my scalp....I think we can all guess what it is.  Its not very big yet, about the size of a walnut, but causes much hilarity in this house.....'Mums turning into a Goat'!  Goodness knows where I will get one next...my big toe?

Im off to varnish my hooves.....