About time I updated

Well what do I write??

Im still me nothing has changed 

Still working on improving my lung function and enjoying the CF gene therapy trials

Im still semmingly improving my physio techniques and noticed that I should really start doing gym work again to help with improving myself.

I have recently started doing core work to help try and build up my chest and sotmach muscles to try and give my lungs another push adn hope I can improve my lung function further.

I have sort of come to the conclusion that my chest and stomach muscles are a bit weak so by improving these I can improve my lung clearance by having stronger muscles to help clear the usual sticky mucus :-) One can hope at least anyway.

Im still determined to put together my fundraising plans for the summer. Once ive had more time to write it down and prepare a good plan i am going to send it on to CF trust to see if they wish to take part and hope to get more people involved.

But im not giving anything away yet as im convince its such a good idea im worried if I tell people my idea may get stolen.

That said once ive made some enquiries, put a plan together and got some essential people to like the idea I will reveal all. I just need people of certain specialist areas to help me

Anyway all that in good time.

I have been trying to spread the word of CF of Course as you may have seen I did the CF trust cystic fibrosis IS poster idea along with many others and so many had such great replies

And on a visit to Bluewater I noticed Nikon doing a free photo opportunity

There head line was
Nikon

I AM

So guess what I wrote for my Photo

I AM

A CF SUFFERER

he he

Sneaky I know but any publicity is good publicity and Of course spread the photo all over twitter and facebook

By the way if you wish to follow me on twitter I am @fox1985

I love to spread the word and im certainly not one to shy away from who I am and what ive got im very proud to be a cf sufferer


On a serious note

I do wish to say a short few words a few people that have recently passed away due to CF and to those in mourning for the lost.

We wont let cf win, it may have unfortunately made some pass away but when we lose some, others appear and notice and we gain more fighters and supporters and the fight against CF is only getting stronger.

Time and Money are the essentials to pointing a CF Life  to a better life and it will happen, its only getting better, results show that and people are noticing it

Death and how its scares some, and why im scared of it but for a rather odd reason

Death does scare some and no doubt about it I do get scared sometimes, not because I dont want to die but that I will run out of time to do the things ive always wanted to do.


That said I still have plenty to do and keep making excuses as to why I havent done certain things yet. That is changing though.

 

CF and a unique sense of humour

I saw the young lads audition on X factor the other night who had very bad cerebal pausey (Sorry my spelling awful) and he couldnt stand without his frame and sat down when he performed and I have to stay I loved it. Not just because he was funny but by the principles he clearly lives by and its something I think alot of CFers can relate too

I for one have a very good sense of humour and im not scared to use my situation as a cf sufferer to make a joke or two (And yes no doubt some are terrible) and my friends are all too aware of that as they regularly join in with a joke or two.

My bowel action being a very well used joke indeed by a few (You know who you are)


Im not the only one who has a sense of humour like this with CF and how I look at it and laugh sometimes even at my own expense

Someone I recently started talking to who also suffers from CF and has had a transplant summed up CF and a cfers typical sense of humour in a great one liner

Cystic Fibrosis is

BREATHTAKING

Absolutely brilliant.

The young comedian on Britains got talent and how cfers can relate

That young lad on X Factor was just amazing

His line off stage was amazing

When Ant and Dec said "you got a standing ovation well done"

His reply

"Yes I think they were trying to rub it in a bit"

We all need to learn a thing or two from him as so many people take life and comments too seriously

I love how i am and CF has made me this way and I wouldnt change it for anything.


A final Note

Some people say why do you do the things you do? Dont you worry?

I dont worry

Why would I?

Im not one to lie down and accept my fate.

I may know my ending but I also know I can keep the pen away for as long as possible that will eventually write it

You could say my story is still at its begining and Ive got plenty of chapters to come up with yet.

What is your cystic fibrosis is? And dose 2

Well what's been going on lately I hear you ask?

Well your not but I'm asking myself

Not much just been doing the usual, tablets, physio, sleep eat, tablets

Like I said just the usual

I recently done a cf poster for a cf trust competition,

I will attach a photo to show it but I had loads of ideas

The question is what does cystic fibrosis mean to you

The headline

Cystic fibrosis is?

Mine was

To live, to inspire others, not by
Disability
But by
Ability

But I had so many ideas

I will not be down with what I have been given but will excel with what I have got
THIS IS MY CYSTIC FIBROSIS

Cf is

About letting your heart lead you and your head store the memories of where you've been

The list could have gone on

I didn't win :-( but was amazing to see so many people's different thoughts and the usual cf sense of humour

I liked

Cystic fibrosis is
BREATHTAKING

Sums up cf and the unique sense of humour cf gives us and our outlook on life quite nicely in one sentence

Anyway well done to the winner I loved his cheeky idea very cool.

I'm still smiling so much about my lung function results from a few weeks ago and I'm hoping today will show it's stayed the same or got better :-) well I'm allowed to be optimistic

And I found out I'm still clear of pseudo which is great but I'm continuing with the drugs for a few more months just keep it away and make sure I don't grow it back again.

So what am I doing now?

I'm on HS1 on my way to London for dose 2 on my cf gene therapy trial

I'm very excited if not a little tired I've had a dreadful cold this week which has exhausted me but I think it's all gone apart from the odd sniffle lol so not too bad and I think I've kept my lung function up okay so not too worried

I love being apart of this trial it's so unique and fun and very educating in terms of how people are trying to progress medicine and research and in their hunt for the cure

Will a cure happen one day?
Well I wish they could and I hope they do but with medical advances now and this research, they are hoping to minimise lung disease in cf with gene therapy and kalydeco and that's the biggest killer 90% of all cf deaths in fact so if these medicines help then that's a huge boost to cf and will extend the average age of CFers so much so it's a big step in the right direction. :-)


But it all takes time and for some people that time is running out before treatment can help them

CF is cruel it's what it's sole purpose is to destroy life and to hurt the people around that destroyed life.

I have to be honest alot of people seem to forget this side of cf including some CFers who think it won't happen to them and I'm the same but the difference is I've also accepted that if it does happen to me never mind I went out trying :-)

I'm fully aware it may kill me and that's fine. Just maybe not yet ay ;-)

Why am I like this?

well I accept I may die and it's my way of confronting it and it helps me live easier because I don't worry about it I just get on with life and if it happens well never mind

I've enjoyed life I've certainly tried not to waste any of my time


And if another cfer loses their fight others must still carry on theirs because theirs no point giving up just yet that just means cf is winning the time trial of life and I'm not prepared to do that.

I'm very lucky with cf that I've had the time I've had and I hope to continue to be lucky but that doesn't mean I won't stop working to fend it off and stay healthy.

I work harder now than I ever have to stay in good health and its a price I'm happy to pay.

Work hard and reap the rewards of what you create

Life isn't to be wasted thinking others will help you.

That's just lazy

Help yourself first, then you can help others at times of difficulty


Anyway I'm waffling on


I have a question for all of you who reads this blog and please please do this

I want you to tell me what you think cf means to you?

What is your cystic fibrosis is?

Come on tell me?

It could be a harsh reality or a fun gesture but I want to hear from my friends family and blog readers?

I want to hear your thoughts?

Here's my picture of me

Enjoy

And on a serious note RIP to the unfortunate who are no longer here and recently lost out to CF

We won't forget you

Sometimes its good to sit back and take stock of life

Sometimes I feel like im forgetting to appreciate things and remember what I have and how lucky I am

So sometimes I like to slow down step outside my own world and look in to see what ive got and remind myself how lucky I am.

Today is one of them days.

As I slept last night I thought about everything that happened to me recently.

Never miss a chance to see the way things are and be thankful for what you have

Right now I feel like life is on the up after recent developments

I recently had a hospital check up and everything just seemed perfect, dont get me wrong not perfect that I can be complacent I must keep pushing myself but the results were extremely good and even more surprising and have given me something that I really needed

A BOOST and a swift kick to remind me stop stop being stupid and never accept THATS IT

I have put on weight
My BMI is good

My sputum results looked good

AND most shocking of all

MY LUNG FUNCTION IMPROVED

It hasnt improved for over two years and infact had dropped quite badly but at the appointment it was the best its been in over TWO YEARS

Imagine my shock.

When I went there I went saying to myself the winters been tough so if my lung function hasnt dropped I would have been very happy

So when I saw my FEV1 had improved by 8% and my overall capacity by 10% I was stunned. I really had given up improving it and had just thought I would not let it slip anymore and maintain what I had.  I was chuffed to see it finally move.

Now I realised complacency will not be part of my health plan. Now im going to keep pushing and try to get back to my magic old grand number of FEV1 that I used to be and remember to forget less and improve more

I thought about it long and hard and realised its actually improved not because of drugs or trials or anything like that but its improved because ive improved myself through better consistency and trying harder to maintain my health for the winter actually made me improve my health.

Ive improved my drugs routine, my physio technique my Ineb routine and my weight has gone up and stayed consistent for over 4 months now.

I am absolutely chuffed with how the winter has gone for my health and has given me a huge boast to keep up everything that Ive changed for the good.

What else has happened in my life?

Ive got a new car. Its arrived and is stunning and has given me another boost and reminded me of how lucky I am to have the job I have and to keep wanting to improve.

My daughter as always is amazing and growing up fast :-) Shes nearly SIX. Where has the time gone?? And she is helping me to keep fit with stair races lol

Ive recently moved to a lovely new house and its officially our first house with my girlfriend who may I say is also amazing to me and has also been a reason ive improved myself by not letting me accept NO

So So many of my friends and Family have been supporting me with my future plans and my decision to want to do CF Trials. I cant thank you all enough and has really helped me to feel good about myself


And my last but by no means least piece of news.

Ive Been asked to be Godfather to one of my oldest bestest friends little Boy :-)
I received a lovely photo of Cohen with a little note saying

Will you be my GodFather??

How could I say no? So I of course said YES.

Im going to be a role model "oh dear" I thought haha but I really am truly thankful and priviledged to be asked so Thank You Amy and Tom. Amazing Amazing.

I have to admit that over the past few months I feel like ive become a bit insecure and have been fighting a few demons in my head. I still have plenty going on in my head and its maybe the reason ive been struggling to sleep

But I have at least now banished some of my demons and insecurities thatnks to so many good things and good people

I still have to improve but I wanted to say to all of you who have read this blog, supported me, wrote to me and sent me messages of support and good news.


THANK YOU

I couldnt do this without all of the good things im told and feel lucky to have what I have

Never rest on your morals

And I for one have realised.

If in another two years time ive improved thats another two years that Ive made things better

Thank You

A date to remember 13th march 2013

Today is Wednesday the 13th march 2013, and I'm heading to London on high speed 1

I'm off to the brompton hospital to their cf research department.

Why?

Today is my first gene therapy trial treatment :-)

Now of course I do not know if I will get the drug or the placebo but I'm excited it could be a new chapter in my life.

I'm sat on the train listening to music enjoying the views and having a good think to myself.

I won't know my results for at least 12 months but will I be able to feel it? Won't I?
How will I feel?

Am I really prepared mentally for success better health?

Am I prepared mentally for nothing?

Am I prepared mentally for disappointment?

Truth is I'm sat here with a tear in my eye because I don't know. I always said I'd do anything to help with cf research in anyway I could including sacrificing my health to help others

Why wouldn't I? I'm a small person who wants to help make a big difference.

I've had months to prepare for this but in reality how could I prepare?

It's the unknown and that excites me but I must also face the outcomes.

I've told myself that this trial is just extra doctors appointments to check on my health but deep down I know what it could really be.

I have stepped up my physio as my technique was crap and better prepared my drug routine and have noticed I'm forgetting less and doing more. But that's because I want to make a difference not just to me but to hopefully be part of a future treatment process for many others.

I don't think I need to be ready I just need to be there and do what I'm told.

I'm loving every minute because I know even if it comes to nothing I've at least tried

And I feel very privileged to be part of this

What's the saying

If at first you don't succeed try try and try again.
That's what I will be doing.

No point accepting life for what it is if there's a chance of making it better.

Unfortunately I can't tell anybody how I'm doing I can only say what I've been doing but no words on if I'm better or worse so I will have to keep that side brief on here but will do my best to tell you all what I'm allows to.

Anyway in a few hours time I will start something that will be a big part of my life for the next year or so.

By the time this is over I will be heading towards 30 years of age.

Considering how life was when I was first born that in itself is a milestone for any cfer.

Hers to the future

I really want to throw my activity monitor out the window

I am currently wearing an activity monitor which is required as im part of the cf gene therapy trials.
I have been told to wear it for 8 nights and im only allowed to take it off to have baths and showers.

And now after 6 nights its really really starting to annoy me and I think its affecting my sleep

It may sound silly but things like this really bug me.

I have a nikefuel watch which is like a wristband and its tiny. I wear it because It monitors what I do just like the activity monitor does.

To give you an idea I have had my nikefuel watch since christmas and I absolutely love it and im obsessed with hitting my daily  targets.

Its tiny very comfy and you woudl hardly know you were wearing one. But to give you an idea of how things like that bug me I even have to take that off some nights as I feel that it annoys me and I wont sleep.

I was the same as a child when I was told I had to wear night splints when I was having operations on my leg and im still the same now with hospital wristbands and I regularly have to take off my bandages when I have IV treatement. Dont even get me started on Socks.

Anyway I know it sounds stupid but it really grates me. I cant wait till I can take it off sunday morning and throw it in the postbox to never see it again.

Isnt it stupid I agreed to do multiple tests for gene therapy even have an operation and suffer for a few days due to the anaesthetic yet the worst thing I can moan about

Some stupid ipod sized thing that tells me nothing but sticks to my skin

AAAAHHHHHHHHHHHHH

I must be weird to worry about things the oppsite way round.

Anyway its all for a good cause I just wanted to have a rant


AAAAAAAAAAAAHHHHHHHHHHHHHHHH


Imagine what it is like having to wear this thing which is like having an ipod strapped to your arm 24 hours a day knowing you have no option but to wear it. I think I may just be going stir crazy with it.
Or it may be just because I have no option



36 hours and counting goodbye horrible velcro straped nuisaince (not for the doctors of course
The only thing I can tolerate wearing to bed of a nighttime is underwear and shorts.

I most likely sound stupid but things like that really bug me.

I can look at blood have things shoved down my throat and needles put in me swallow pills easily but one thing that really gets me is little things that touch my skin.

Always have had this annoyance always will.

I feel like i have a ball and chain wrapped round my arm.

The first step to the gene therapy trials

Well what do I say

I should start by saying I am sorry if the details are vague but due to the trials being highly sensitive I will not be allowed to reveal how I get on whilst on treatment and I won't know if I'm on the drug or a placebo as the trial is a double blind trial.i will only be able to reveal what procedures I do but not how I'm feeling. I should also say it means I won't know and the doctors Won't know what drug im on. Only the drugs company running the trial will know what I'm on and will not reveal anything until the very end because it is kept completely top secret. The doctor will only monitor me throughout the trial but they cannot even reveal results of the tests that are done throughout. They simply monitor and report back to the drugs company who survey the results throughout the trial to see what's working what's not and who's responding to what.

So what have I done so far

When I signed up I agreed to be part of the gene therapy trials and I signed up to take part in all three parts of the gene therapy trials. This includes the standard gene therapy trial then the other parts which are optional which are nasal tests and bronchoscopy examinations.

I went up to London Brompton hospital last week for my screening tests and the first nasal tests and first bronchoscopy examination.

On day one I arrived and met all the team involved and discussed what goes on and what's done and what to expect and the duration of the project. I then had a series of tests done (very similar to Annual review tests that all cfers have to do once a year) and I was pleasantly surprised to discover that my lung function hasn't gone down at all over the winter and had infact gone up very slightly.

I'm extremely pleased with my lung function considering how tough the winter has been in terms of the weather and the physical struggles I've had to deal with.

I was even more pleased when they said I passed all the screening tests and was accepted to go on the trial.

That felt like I had won the lottery to be told for certain I'd be allowed to do the trial.

I am extremely grateful and privileged to be part of this and no matter what happens I will never be able to thank certain people enough to be given this chance even though I don't know who exactly to thank just yet.

I was given so much information and I do think I'm like a sponge I love to soak up interesting information especially when it comes to cf and new and advancing treatments.

Anyway after a late finish to day ones test (9pm) I headed off for dinner and a walk around south Kensington. I have to admit I'm now totally in love with London and if I ever am lucky enough to be able to afford it I would love to have a place in that part of London it's just so beautiful. Around there. Anyway that's for another blog entry

I was given a room for the night in the nurses quarters as I was due to have my bronchoscopy the next day.

I have to say I am disgusted with the conditions of the nurses quarters and have even more admiration for them and also sympathy for them as no one should have to deal with them conditions especially when they are expected to carry out a job like they do every day of the week and then try and rest when the rooms are in such a poor state. But I will write another blog about that in the near future

Anyway after a very bad nights sleep where I slept on the floor due to the bed conditions I was up at 5:30am to do physio ineb and get ready for my bronchoscopy operation.

After being greeted by the team I was ushered to the operating room and prepared for the tests.

I was knocked out completely for the bronchoscopy due to the nature of the tests that were to be carried out during the procedure. I have never had one before so was excited to find out what they discovered when I woke up.

My bronchoscopy went as planned along with the various other tests they done and samples and I was very intrigued to hear what they found.
I won't discuss my results but I am embarrassed to say that they noted my lungs were quite heavy with phlegm and I have to admit I'm glad they told me this as I knew I needed to adjust my physio technique and after a few tips I have changed my technique and will certainly be doing more to make sure my lungs are squeaky clean for the next bronchoscopy and save myself of embarrassment of having to see pictures of my dirty lungs

Sometimes you know your doing wrong but it takes a hit of reality to make you change well seeing my bronchoscopy photos and the results have made me realise there's no time like the present to face reality and make a change for the good even if its hard to do.


After nearly two hours of heavy anaesthetic I was woken up and taken to recovery.

I have never felt so rough and I'm still getting over it now five days after I had it done not from the anaesthetic more from the pains I'm getting from my chest and the blood I'm still getting off my chest and my throat is awful

I now know why anaesthetic is so horrible and I've certainly suffered from it.

After four hours of observations I was asked to do a few more tests before I could go home.

I have to say that no one should have to suffer nasal brushings oh my days the pain. Ad the nose bleed was not pleasant.

To give you an idea nasal brushings is like sticking a wire brush right up your nose and then giving your nose a good clean. That should give you some idea of what had to be done and the pain was unbearable even for the short period of time it was done.

Anyway

After a good weekends rest I'm feeling good and my lung function has crept back up after suffering from the anaesthetic

I'm so intrigued by what I will be doing and what the gene therapy is all about and how they hope it will work and I recommend anyone who has cf or knows about it should research gene therapy on the Internet it's very exciting.

Anyway

I now am waiting for my first drug treatment which is in two weeks and then I have 14 months of tests and procedures to look forward to and I couldn't be more motivated to potentially be part of something life changing and so historic.


I hope you enjoyed reading this and I will do a few more blog entries on various things over the next couple days.


Oh btw I now have my own lung function machine which is very cool but a little obsessive and I need to stop playing with it.

Right now I couldn't feel more alive with fear excitement nerves and the feeling of the unknown.


I told someone the other day

I feel like an archeologist. I'm digging into the unknown and only time effort and patience will tell me how I've done

I may unearth a new discovery

I may not

But how cool to know that you don't know what u might find

And if I find nothing

I move on and wait to discover the next big thing

If at first you don't succeed try try and try again.

Nothing is perfect at the fast attempt

But lessons will be learnt if mistakes are made

It's how we get up after being knocked down that makes a difference

Success is nothing without failure

Success is never truly felt if you don't respect and appreciate failure

Expect nothing and anything after that is a bonus

Expect failure
admire success
and clap someone who's willing to venture into the unknown

Someone said to me I'm so brave for doing this

I'm not brave

I'm just not willing to sit around and wait for someone to tell me the answer
I want to be the person who writes the answer

I'm very much prepared mentally for anything that doesn't go my way and I'm willing to risk everything to improve my health and more importantly be part of something that is working towards helping every cf sufferer and future sufferer


What I'm not prepared for is success, why? Because until I know what success is I cannot know how to deal with it

I am me and always will be if nothing comes of this trial I will be no different

If something good does happen I will still be me just a healthier me

Unfortunately I won't be able to tell you that until the results are published in nearly two years time :-)


I just want to say a quick thank you to everyone who is supporting me, to everyone who has read my blogs and followed my progress and contacted me with encouraging messages with support and wise words

This isn't just about me it's about many and that's the bigger picture.

I'm not a doctor but I hope to give the doctors the results they are looking for.

If I don't I will be straight onto the next trial


I'm so pleased to be part of this process I never ever thought I'd get the chance and I would never turn it down no matter what pain or suffering or good or bad I must go through physically or mentally.

Goodnight

My BIG ANNOUNCEMENT

Well here goes

I am going to be doing GENE THERAPY TRIALS

Unfortunately ive been told that I will not be allowed to tell anyone about how im doing on these trials and how im feeling but i am allowed to tell you im doing the trials and I couldnt be happier.

In short Gene therapy isnt just a treatment, it is hopeful that Gene therapy could be the potential CURE of cystic fibrosis. That may sound like a massive overstatement but that is the end result that researchers are aiming for and Im hopefully going to be part of that historic process

Now that sort of tells you why I feel so priviledged and honoured to have been asked to do these trials.
To try an explain gene therapy without boring you this is basically how it will/should work. I have taken an insert from a website which explains how it will work in short

Many diseases such as cystic fibrosis, are caused by faulty genes. 

Gene therapy involves the addition of a healthy, working copy of the gene into appropriate cells in the body to replace or override the faulty copy present in the genome.

Unlike most conventional medicines, instead of treating the symptoms of a disease, gene therapy has the potential to correct the underlying cause.

As far as im aware it is aimed at helping the lungs as the first step but that in itself will be life changing for a cf sufferer as it will change so much in terms of life quality, fitness, medication and overall wellbeing.

Of course there are always risks involved with participating in such trials but I have said ever since i first heard about gene therapy that I wanted to try and get on the trials and help out in anyway I could. The risks do not worry or scare me because the rewards will be potentially so HUGE.

I could not turn this opportunity down I had to say yes straightaway and today is my first step into starting the trials and maybe changing my life forever.

The trials work like many normal drugs trials so I have a 50/50 chance of being given the real gene therapy drug or the placebo. But I dont care 50% chance is better than no chance.

I am booked to go and visit the team within the next few weeks and have an operation. Im not sure if I can say what it is the operation is for but I will say that its an important part of the trials.

I am sorry that I cannot blog about how I get on but will update as best I can without breaking the rules.

I can say that this is not a short term Trial. I will be involved for nearly 14-15 months doing various things and the odd operation or two.

But for me the time im asked to give up is of little importance, I have said since day one of knowing about gene therapy Id give my life if it meant I had a chance I could come out the otherside a healthier and am very happy I may have the chance to give CF a proper kicking. If it works more importantly I could have a longer chance to enjoy the important things I have in my life and I cant give up the chance to possibly live longer.

For someone like me its like winning the lottery because it will be life changing if it works.


I once told someone who was fed up of CF and living with it :-

"Why live a hard life of fighting if you dont believe your fighting for something better?

That is why I will doing anything to fight CF because I believe im fighting for something better.


And to the person(s) who put my name down for the trials I Thank you, you just dont know how much you may change my life in the near future.