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
Tuesday 19 March 2013
Wednesday 13 March 2013
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'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
Friday 8 March 2013
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.
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.
Tuesday 5 March 2013
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
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
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