Wednesday, 25 September 2013

We're Going To FLORIDA!!!

Well not just yet...

BUT we are GOING TO FLORIDA.... and we are there FOR HALLOWEEN!!!!!

OMG I am sooooo excited!

This is the type of Holiday all parents wish they could take their kids on.... but most struggle to save enough to get there
(Thanks Deal or No Deal).

I cried about not being able to take Kyd anywhere like this on holiday all those years ago because I thought I'd never be able to afford it.... but now I'm proving me, myself and I wrong
(again Thanks Deal or No Deal).

A holiday where you know you'll be in their good books for ages after... well until the next time you say no to something.
One where you know you will all remember forever.

A childhood dream come true.

A family holiday that we will treasure forever.

One in which we as a family, will only get to go on this once... well, we think.

You see our Kyd hasn't been too well. It is something that has been brewing since he was a baby but seems to have come to a head... 

Annnnnnd now we are head to head with a surgeon as to where to go next.

We meet with Kyd's surgeon at the start of October and then we will know more.

If he has the operation which has been proposed then this will be our last BIG holiday for a very, very, long time and so this means this holiday is a HUGE deal.
We have a little schedule we are going to try and stick to, thanks to the Visit Orlando Holiday Planning kit, starting with and ending with SeaWorld.

Kyd loves animals, actually I should say, animals love Kyd. 

Especially Penguins and Giraffes for some reason!
SeaWorld in Orlando is one of those places you always hear so much about and for kids who love Rides, Sea Lions and of course Penguins it is the place to be.

Kyd will be taking the Penguin Up-Close Tour which allows him to learn more about penguins and he even gets to touch and play with one before he enters into the Antarctica: Empire of the Penguin, which allows you to take a ride through Antarctica learning and playing along the way. Each car is a mobile simulator, with movements that allow all guests to become one with the story line as they follow a young penguin’s adventures. For the first time in any theme park, this motion-based simulator ride will be completely trackless and guests will choose one of two levels of adventure with various levels of intensity.
Busch Gardens in Tampa Bay doesn't just have rides either... it also have Giraffes... No Kidding this trip will have everything Kyd can dream of! 
The Serengeti Plain in Busch Gardens has all sorts going on... including Giraffes... Hurrah for Giraffes

 He is going to love it so much.
We are all going to love it so so so much.

I'll let you know what else we have planned soon.

Tuesday, 10 September 2013

#SaatchiBill - Lord Saatchi vs The Glass Wall of Cancer Treatments!


Isn't Cancer a bitch?!...

A statement I often hear from the mouths of those effected by the dreaded C word.

The scary thought though is that in today's world more people are touched by cancer every day. Whether it be by being diagnosed themselves or having a friend, family member or even a favourite celebrity diagnosed with the dreaded big C and having to watch their fight unfold before their eyes, from behind a generic glass wall in which you can't reach to help them.

Or, if it's you with a heartbreaking diagnosis, looking out on the world from the other side of the glass wall, but not being able to reach out to the people trying, and so desperately wanting, to help you through this nightmare which is unfolding in front of you and them.

This is always a desperate fight to help by everyone around. To try and break down that wall that prevents them from finding a way to ease the pain to save a life... a fight that sometimes is won... but often is lost.

Sadly that wall was partly built by laws that were at one point beyond our reach. Laws in which we the public, don't have access to change. Laws in which every medical professional is bound to. Laws in which are out of date and need to be changed but can only be changed by the powers that be... With a little help from their friends...

WE, THE PUBLIC, ARE THEIR FRIENDS! (I know that isn't often said about Politicians)

We can help change this law, we can speak up and innovate the medical profession, we can support Lord Saatchi in his fight to pass the Saatchi Bill in Parliament.

On Wednesday 11/09/13 at 11.30am the Saatchi Bill for medical innovation will be read in a 10 minute slot in the House of Commons, it is unusual for a bill to be read there this soon as it is still going through the house of lords. We would love some amazing People Power support on twitter using the hashtag #Saatchibill around that time if you have twitter.  

You can also watch the live stream of the house of commons here http://www.parliamentlive.tv/Main/Live.aspx  

But this isn't just about cancer. This is about all types of treatments for illnesses and diseases being held down by protocol set by law. I can't dispute that in some cases the current law was set up for a reason but in most... it means that patients aren't given, offered or even know about, life saving and changing drugs available for their illnesses and treatment. The members of the public who need  the most care and attention from our medical professionals, have been summoned to death by an out dated law preventing Doctor's and Scientists from progressing new and improved treatments and innovating the medical world.

Did you know that the treatments given to cancer patients were developed over 40 years ago and the progression of them has been little to non since they were introduced. The treatments often leave patients feeling more ill than when they started and although they may save the life of the patient in the long run, they can often cause problems during and after treatment including more life threatening illnesses... scarily most people know how ill you get during chemotherapy now a days, as sadly most have now seen this 1st or second hand.

Not only with Cancer do we see the dreaded side effects of medieval treatments that are used as standard in the medical world. The treatments for Lung Disease, MS, Hepatitis, Parkinson's, TB, Alzheimer's, HIV, Leukaemia, Lymphoma, ME... I could go on and on with names of things that are limited to the standard practice of the current law.

Nobody is saying a change in the law will cure the world of cancer or illness or that they can change the fact that people die everyday from anything they may encounter in their lives...

They are just saying that with a new look at how things can be done the scientists behind the treatments, the doctors that administer them and the patients that have to deal with them, have more power to say what they can and can't do to try and save, treat and make comfortable some of the most vulnerable people in the country.

This week I met Lord Saatchi and a few of his colleagues at The Houses of Parliament. I had the pleasure to sit and listen to his plea for help with getting the Saatchi Bill passed in Parliament. He grabbed my attention and my heart as he went into a harrowing account of his late wife's fight with Ovarian Cancer and that this was what was fuelling and powering his fight and belief that change is due. He himself was on the other side of the big glass wall trying desperately to find help for his wife whilst he watched her deteriorate under the treatments and suffering of the deadly disease. She sadly passed away in 2011.

With Lord Saatchi on the panel in front of me that day, was a lady who lost her young teenage daughter to a rare bone cancer. As she looked us in the eyes and told her story, I began to remember the fight of a friend who had sadly lost his life as a teen, after a long painful fight with a similar type of cancer, He passed away only weeks after Kyd was born. As a parent I looked into her eyes and although she was bravely reliving the pain her daughter was in, I could see that empty void in her heart, a hole nobody but her daughter could fill... this as a parent and knowing about how effected the close friends and family of my friend felt almost 11 years ago, made my heart bleed for her. She bravely, told us about how haunting it was to be on the Teenage Cancer ward at the Royal Marsden Hospital and that her and another parent took it upon themselves to fight for different and innovitave treatments for their children and all the other children around the country that were told they didn't have any other treatment options, even though the ones that have been used before had failed and others were on offer but out of reach as they weren't standard practice....

Bloody Standard Practice... What is Standard Practice? Why is it so rigidly in place and set in stone even when the patients that they are supposed to be helping are needlessly suffering? Why do they have treatments in America and other countries that are proven to work but over here we can't access because of protocol and funding...

I found this answer out whilst sat there trying not to remember every person in my life I have known to fight cancer and other illnesses. Whether they have won, lost or are still fighting that fight, it still breaks my heart to think that I can't help them.

So the answer to what and why standard practice exists and can't be broken... Fear.

The fear of being prosecuted or sued for malpractice or negligence mixed in with the fear of getting it wrong.

There are so many people out there that want this to change, who want to help people, innovate the medical practices into the new world, get the medieval treatments and kick them in the ass and into a new easier less risky way of treating such life threatening and limiting diseases and illnesses... but at the moment they seem to be bound and gagged by the law that is currently in play.

With your help we can change all that. We can take your support into parliament and we can say THIS NEEDS TO BE CHANGED these people need to be given the opportunity to change the standard practice and make it more accessable to every patient, not just the chosen few.

This Saatchi Bill gives us the ability to chip away at that huge glass wall, the one that stands between us and our loved ones, friends, relatives and colleagues who need our help.

It also gives the patients a voice. It gives you a chance to say 'I want to try this' and for your plea to be heard not only by one doctor bound to standard practice, but a panel of multi ability professionals who CAN look into other options, who CAN say yes to trying all they can to save your life, who CAN change your world.

The Saatchi Bill gives hope to all those that have lost all hope, all those that feel like that glass wall is getting ever thicker... and for all those who just want to help not only for them, but for families who in the future will have to deal with such struggles and again find their glass wall thickening rather than cracking under the Standard Practice the current law provides.

Lord Maurice Saatchi and the Saatchi Bill needs your voice...
He and his team have mine...
Help him get this passed by Parliament...
Help him change our lives as a country for the better medically...
Help him help us.

How??

  • Contact your MP and ask them what they are doing about supporting the Saatchi Bill. 
  • Shout on Twitter, Facebook and anywhere you like about how much it will change the way these horrible illnesses are treated in the future.
  • Contact your local support groups that support people with any kind of treated illness or disease and ask them to get involved and support the bill.

If you really want change PLEASE try and keep up to date on the passing of the bill and when it storms ahead be proud that YOU helped that change. In the future when a new innovative treatment helps to prevent or treat an illness or disease successfully and you see the changes that makes to so many lives near and far to you, be proud... YOU helped put that smile on the faces of that patient and their family.

Remember this is a really important bit of legislation that helps free good doctors to deviate from standard practice and find something that works.... 

Don't forget you can also watch the live stream of the house of commons at 11.30am 11/09/13 here http://www.parliamentlive.tv/Main/Live.aspx 

YOU can make a difference, YOU can be that one tap that cracks the glass wall and shatters it into pieces, YOU could be why so many get to hold their loved ones tighter when they get to the other side of the wall.

The Saatchi Bill WILL change lives.

 YOU CAN CHANGE LIVES.



Please follow @SaatchiBill on twitter whilst using #SaatchiBill as much as you can.
Thank You xxx

For other views from my fellow bloggers who accompanied me to the Houses of Parliament on Monday please read below...

 Tired Mummy Of Two - Can Our Generation Find A Cure For Cancer #SaatchiBill
 Vevivos - A Cure For All Ills. 
Baby Baby - Finding a cure for cancer #SaatchiBill
More to come xx

Honesty, Life, Love and Mental Illness

Somewhere between wanting to live the dream life and actually living the dream life, something broke.

The worst thing is, it makes no sense as to why...

Depression is a funny thing isn't it? Sometimes people have a reason for the dip into the darkness, sometimes however, even years down the line, they still have no understanding as to why they fell so deeply, so quickly.

The sad thing about depression is that it is never really gone. It still lurks there silently in the background, like a tiger in the grass about to pounce on it's prey.... but less impressive to watch on national geographic.

I honestly think that someone up there has a remote control, with my name on it. They point and press it at me when what's going on gets boring or they want a soap style twist in the story.

My life is a little like a drama from a soap storyline as it is to be honest. A little bit of Eastenders, Corrie, Hollyoaks and Emmerdale all mixed together with the bad acting of Home and Away and Neighbours thrown in for fun. The only thing I'm lacking at the moment is a crazed murderer going around killing the cast of my life for no apparent reason... whoever has that remote, don't get any ideas, this isn't a request for another storyline.

My life so far has involved so much drama. So when the drama finally faded and the happy ending was on the horizon, I thought I was finally becoming an extra in someone else's drama rather than the star of the show and I felt so, so, happy about that. I thought nothing could ruin it and the storm had passed.

The thing is, the idiot with the remote has a button on it that says 'Depression' then 'only press when in need of a tear or two'. It is a button that once pressed can't be undone until the repair man comes out... and you know how long it takes for a repair man to come out. You can never guarantee that the repair man will be on time or can even fix the problem too, which in itself is frustrating.

I have no idea what triggered the last episode of issues but I think I may have just hit a brick wall after the excitement and stress of the past few years and our amazing wedding.

I slowly deteriorated over a couple of weeks, fighting it at every step, hiding it so people couldn't see that I was struggling. The fact that this isn't the first time I'd fallen of the depression wagon, meant that I knew what was happening and so I could try and ride the rollercoaster without anybody noticing.

That wasn't as easy as it sounds. I was easily upset, paranoid, scared, panicky, stressed... the list goes on... but I also felt constantly ill. My health issues I have, that are under investigation by a neurologist, started to get even worse than they were before, I now have constant pin and needles in the left side of my face as well as my hands and feet... my body just feels broken.

Everything was just getting on top of me and I felt like I was trapped underneath a glass or like a wasp in a can of fizzy drink, desperately trying to get out, but the gap was magically shrinking and taking all my time and space with it. I felt like I was gasping for breath and being drowned by thin air, like I was going mad.... well madder than usual.

Don't get me wrong, I can't explain how happy I am with my family life, it is all I have ever wanted. I can honestly say I am grateful everyday for having such beautiful children and a loving husband and I would never take that for granted or not understand how lucky I am to have them...

So why am I feeling like I'm struggling for breath as I try and reach the surface of a rapidly closing coke can?

I know it sounds dramatic and at the risk of being attacked by Katie Hopkins for being a pathetic human being, I have had that hideous feeling that I am failing mentally and physically at life...

There I said it.

I know I can do better at certain things and the fact I am currently distracting myself with stupid things that don't necessarily need doing like, painting band names on Kyd's wall or creating Tortoise houses (long story I'll fill you in later), is a sure sign that I am starting to get better as that is what I do best... procrastinate.

So why am I writing this post and why on earth am I telling you all this?

Well I like to be honest when I've sneakily been feeling rough for so long and I know that my blog has been neglected in the process of feeling crap so it is the best way possible to put out a mass apology.

SO I would just like to apologise to all of the people I've let down, not replied/responded to, not answered the phones to. Or the ones I've not emailed, text, facebooked, tweeted, reviewed or commented on blog posts or life events... or even said hello in person.

I am really sorry and I know it is frustrating and upsetting at times to be so blatantly ignored but sometimes my head is in a different place and I physically can't speak/type/live a normal life and I sort of curl in a ball and hide in the corner until I have to pretend again and paste a fake smile on my face....

I love you all really and I would like to share these bottle of Gin with you all...


So get a nice big glass I've got enough to share,

*throws the ice and slice at you all*

Have you all got your glass half full?

*raises glass in the air*



Here's to Honesty Life, Love and Mental Health... well Health in general actually.