Sunday, 23 August 2009

"Jane's Journey"








Wednesday 19th August was the launch of the kidney cancer awareness campaign and "Jane's Journey", a short film which highlights the importance of the extra time which can be bought for terminally ill patients by the use of the new kidney cancer drugs.


What a day !! I hardly know where to start - except it was early, 8.30am to be precise, when we were picked up from home and taken to the train station...complete with 3 cases for an overnight stay !! We were being delivered virtually door to door so I wouldn't need to walk very far. In fact the furthest I had to walk was out of Euston station into another taxi which took us to our hotel, The Shaftsbury, right in the heart of theatre land.


The event itself was due to start at 3.30pm but the press would be there from 2pm for interviews so we didn't have long to get ready. After Catherine had the usual battle with my hair, its far too long now and really needs a good cut, we set off on the short walk to the Curzon Cinema. It was a beautiful, sunny day and really warm and my legs wern't too bad so I managed to walk there with just one stick.


The Curzon Cinema is small and painted black on the outside - in fact it looks like one of those that show 'X' + rated films in foreign languages. But inside its lovely, spread out over 3 floors and there was a bar and refreshments set out for our launch on the 2nd floor - the cinema itself was on the 3rd.


We met up with the ladies from Red who were very busy organising things with Sky News and AP - the two film crews who were already there. Eleanor, the reporter from Sky, was lovely - really friendly. The lady reporter from AP was terrifying to say the least - very bossy and demanding I'm sure she is really good at her job but she scared the life out of me !


I did a quick piece with Eleanor in the cinema itself with the film playing in the background which went really well - then it was Cruella's turn (I call her that for a reason as you will see) She wanted footage of me and my family walking down some stairs and into the cinema. Hmm...ok. I really cant 'do' stairs because they make my legs hurt too much and I end up going down them on my bottom at home. Buy I thought Id grit my teeth and have a go - trooper that I am ! So we did it. And again. And again. Because she wasn't happy with the results. By this time I was waddling like a penguin such was the pain in my knees. Still, she got her footage but if you see it notice the fixed grimace on my face !


I then went into the cinema with her and her camera man where she barked questions at me for a few moments, then thankfully she said 'thats all' and swept out. Phew....


Time for the screening. I didn't realise there were so many people there, the cinema was almost full. I sat there clutching my speech (more of that later) my mouth so dry my tongue was stuck to the roof. Nick Turkentein, from the James Whale Fund, Nicholas Owen and Pat Hanlon from UKKC introduced some of the shorter clips with lovely, witty, off the cuff speeches and then it was my turn.


I'd been working on my speech for a week. I'd had to write it down to make sure I covered everything and to stop me gabbling which was a distinct possibility anyway.


I stood at the lectern and looked out at the sea of faces - my family, friends, Rose and Clive, Dr P, Daniel and his team, the ladies from Red - and a huge lump appeared in my throat. This was the culmination of such an emotional event for me. Oh Lord... don't let me cry now. Then I saw Grace waving at me "Hello Nanny Jane!"


So 'Nanny Jane' gave her speech and didn't falter - not until the very last few sentences where she explained that her disease had progressed and noticed several people sniffling on the front few rows.


'Jane's Journey' was shown but to be honest I watched it through a film of tears. This was such a gift - not just to every present and future kidney cancer patient, but to my family. Something so very special they will be left with when I'm gone.


The rest of the afternoon passed in a bit of a blur - hearing the very kind comments from everyone and discussing where to go in the future. With me trying to ignore the increasing pain in my legs. Id been on my feet all day and was really noticing it now. Id taken my MST that morning but like a dummy had forgotten to bring my Oramorph out with me.


At 7pm some of us, family, friends etc.. went for a meal to round off the day. It was nice and at last I was able to sit down and relax a little. But the damage had been done and it wasn't long before I had cramp in my hands and across my middle and all over my legs and feet - and I had to admit defeat and go back to the hotel. It had been a very long day.


At 4am I woke in agony. And stumbled to the bathroom where I sat on the loo sobbing the pain was so severe. I took 20mls of Oramorph and sat groaning and crying waiting for it to work. Which it did after what seemed to me was an hour but in reality was about 5 mins.


Like I said earlier - what a day. And I had to be up early the next day to go to a radio station and record some interviews. Fortunately I woke feeling much better and it was a bright and breezy Nanny Jane who set off that morning - this time with her Oramorph in her hand bag !


















9 comments:

LYN said...

CAN'T WAIT TILL I CAN SEEIT..YOU MUST BE SO PROUD JANE..YOUR LEGACY WIL ALWAYS LIVE ON...YOU ARE AMAZING....

LYN said...

JUST WATCHED PART ONE ON YOU TUBE...I AM ABSOLUTELY THRILLED!! I GET TO SEE YOU!! YOUR FAMILY IS SO GORG!!...WOW JANE..THANKS SO MUCH!! IT'S FAB!!!

LYN said...

SORRY FOR THE 3 COMMENTS JANE!
YOU SAID YOU WISH PEOPLE COULD SEE YOU PLAYING IN YOUR GARDEN WITH YOUR BEAUTIFUL GRANDAUGHTER..WELL THAT'S EXACTLY WHAT I JUST DID!

YOUR FAMILY IS BEAUTIFUL! AND NOW I KNOW WHAT MARTIN LOOKS LIKE SO WHEN HE TURNS UP HERE ON HIS HARLEY I'LL RECOGNIZE HIM!! ;-)

THANK YOU FROM THE BOTTOM OF MY HEART FOR SHARING YOUR JOURNEY WITH ME JANE...AS I ALWAYS TELL YOU YOU ARE AN AMAZING PEROSN AND I AM SO HAPPY WE MET THROUGH OUR BLOGS...

KEEP ON KEEPING ON GIRL!!

Sybil said...

I havn't yet seen you on the TV Jane, but the utube was great..You are all so lovely to look at an dthat wee one is just the "bees knees"
Keep smiling, and taking plenty rests !!
Love Sybil xx

ADB said...

You do excellent work in promoting awareness of cancer, and how it affects you. You're an example to others in a comparable position - with the videos a good testimony to that.

karen said...

sweet jane, loved, loved, loved the youtube - had me in tears and laughing and pondering and tripping through so many emotions. your family is absolutely lovely. as a fellow rcc patient, i am so very grateful on behalf of all of us for what you give us and how you speak to the world on our behalf. i know uk and canada differ somewhat on rcc treatment - like you, I long for the day when all rcc patients have access to every latest possible treatment, regardless of where they live. health is a universal common denominator - boundaries shouldn't matter. you are a very special person and i am privileged and thankful to have you on my team.
best wishes as always from across the pond, always thinking of you.
karen in ottawa canada

karen said...

extra strongs hugs also sent your way - can't forget those! I find they add so much to my day!

Deb said...

I just read your post jane and I am soooo very proud to call you "friend"...as I've said before, you are one amazing lady! I've not checked out the video yet, but once I find it I'll send more comments your way.
Sure hope u r feeling much better than last time we connected. You are a true inspiration to all of us!!!

Joanne said...

Jane,
I LOVED your video. You truly are an inspiration to me. I tried really hard not to cry but it was hard. I hope you will soon be on your way with Plan B & tackling this monster yet again.
Take care Jane,
Joanne (RCC, Grimsby, Ontario, Canada)