Wednesday, June 30, 2010

Support Rachael and CF Awareness

The Subject of my blog tonight will be some of the other people that I have talked with or heard of while I have been waiting for my Lung transplant they are so nice and selfless and deserve all the good things in the world.
The first person I will mention is  Rachael Wakefield

She is the blogger responsible for Anything But Ordinary and also the inspiration for this blog.
You can find on my blog list she had a Double Lung transplant back in March but is taking a while to get fully well, as you can see if you read her latest post. I would like for everyone to send out good thoughts for her and those who are inclined maybe pray that she will get over her problems and make a full recovery.

The other person I would like to talk about I have met on Twitter and she campaigns tirelessly for CF (Cystic fibrosis) awareness. She has two sons with the condition who are 15 and 7 and I feel that I must bring you attention to her present project her name is Lorraine Barnes
She has been contacting celebrities to wear T Shirts and take photos to post on Twitter to show their support for awareness of the condition which leaves many suffers needing Lung transplants very young in life due to the damage it causes to their lungs.

Her website is at Barnes Boys  

Her Twitter name is  @CysticFibrosisF

Another one of the bloggers on my blog list is someone who suffers from this condition is Jodie who is the blogger on Transplant list is waiting for a double lung and heart transplant because of this condition

If you what to know more about this condition
have a look at   C F Trust

Finally have a look at her video and see who has done their bit for C.F. Awareness
see how many people you can spot?


Monday, June 28, 2010

Daughter's with Duke of Edinburgh, XBox on a Diet

As you can see from the title of this post my weekend has been busy my daughter has been away on a trip to the New Forest to walk across this green and pleasant land and cook meals with a camping trangia this was the final trip for her award.
She was much happier at the prospect than the last trip but was still worried about the hot weather,but returned tried but happy after a good weekend.She told stories about one tent falling down and came back with a multitude of snacks she didn't eat. Her feet hurt, her back hurt,she saw deer and wild horses  and was glad she had gone.
It brought back memories of my many camping trips in the past with my Family,Scouts and also in Europe as a young person. Finally the tent I had, became a casualty of the last Glastonbury I attended back in 1998 when after rupturing a disc in my back I spent five hours in agony carrying my belongings back to the car in the poring rain before abandoning it to the clear up squad.I was sorry to see it go I had used it to go to many festivals through the years including the last Stonehenge free festival in 1984,I am on the video of this that I saw on-line a while back but it seems a age ago now. You can get a idea about this from the following clip I am not in this one though Stonehenge 1984
The other thing that happened this weekend was my sons Birthday he was 14 and is growing up so quickly I can hardly keep up.His only birthday wish was a new console.We were luck, when he got the first one a Nintendo Wii to be one of the only families in area to get the newly realised console due to the shortage of supply that Christmas.Because I had pre ordered early  I was the only customer in the local Currys store to get one.
Now this year he said that he wanted a XBox so today we went out to Oxford and pre ordered one of the new slim XBoxes with the hope that Kinect controller when it is released  will  stop any more controllers whizzing across the room.He was so happy. Maybe now he will not feel the need to keep on to me about how good the XBox is and I can look around for the money for the online subscription XBox live that is a requirement to play with other across the internet.For all those who want to see a picture this is what it looks like
XBox 360 slim with Kinect controler
Due to the good weather My breathing has been quite good and I was able to get out alone for a afternoon and look around at the options available before we went today and ordered it.That may not seem much but I have lost a lot of my confidence since I got unwell and mostly go out with someone to help me with the things I find impossible like carrying stuff and also to be available to get my oxygen from the car should I become very breathless.
I am hopping that this will carry on and I might be well enough to go on holiday to visit my wife's folks on the south east coast,as we missed a holiday last year due to my hospital admission and protracted infection.
Holiday require a lot of organising so I will leave a discussion on that for another time.
Finally my eldest Daughter is about to leave the country for a season at a well known ski resort for a couple of months so if she is reading this hope you have a great time.

Monday, June 21, 2010

Day Of Fun

View from the saloon
After my post yesterday I thought that I would post something about how I had spent my weekend as I mentioned before I was hopping to get to the local carnival which was a low key affair with some stalls and not much else by the time I had sorted out my nebuliser and got myself together.I was too late to see the carnival procession, even missed our camera club exhibition of photos.I was fed up, so I decided to go to the funfair that was going on and see what else had been organised.When I got to the fair there was a "wild west" re-enactment going on where a group of middle aged men were playing with blank firing guns it was good for the kids and the guns scared some of the little one rigid. But I did get a couple of views of my own for your entertainment.  
Gunfight at the local field

We went to the Funfair and my son went on some of the rides including the dodgems which he really liked and another ride which flung him around.It brought back memories for me of the last time I had been on a fair ride, at this same fair I think. I had gone on one of the rotating rides, with my son and daughter, that squash the riders in the seat against the person sitting on the outside of the seat.That was me and as the ride speed increased, I found the kids were squashing against my chest and I couldn't breath. I panicked I eventually had to gain attention of the operator, who stopped the ride earlier to allow me off. I was really scared and that was my last fair ride.I loved seeing my son enjoy the rides,I spent my time taking some photos.I have included a few to give you a flavour of the fair

Ghost Train - Don't think much of the attendant

The prizes wait for a home

Finally I was looking at a blog today and thought that my problems might be solved I saw an interesting Google sponsored ad on the Wordpress page about Lung transplants
That's a good saving

Could all my problems be solved if I got enough money I followed the link to this
Better luck next time!

Never mind .....The lung function meter might be useful but how will seeds for tomato plants help me with new lungs, only Google knows I suspect. Better luck next time :)

Sunday, June 20, 2010

FATHER'S DAY - Say Hello to your Dad today if you can

As I woke up this Sunday I was greeted by two lovely cards and presents from my daughter and son they made me so happy.Along with the happiness, this day reminded me that this would be the day that I would have been sending my own card for my father. But this year marks five years since he was taken suddenly in April 2005.
My father and I sometimes had really hard times and I caused him a lot of grief in his life,when you are young you think you know it all and feel invulnerable and never listen to good advice.Funny how right he was in so many things he died suddenly and lots was unsaid between us.I had become ill with the bad case of pneumonia that lead to my health decline that January and had not been to visit much.My wife also lost her father to a sudden unpredicted death.
Now as a father, I hear my father's voice,coming out of my own mouth and understand him better.On this fathers day as I face my illness and the frightening prospect that I might not get to transplant as 30% of people waiting for lung transplants die before they get one.I would really like my dad to talk to.
Another thing that prompted this post was on Twitter earlier today one of my followers posted a picture of his child's grave that he had just put flowers on,and it reminded me that for some people fathers day is not a happy day and they don't have a choice in that.

I would like to send a fathers day wish
to all fathers missing their children
and all children missing their dad.

If you are not talking because of bad blood between you.Give it up swallow your pride and make up with your dad. You might find you are more like him than you think you are.

Don't leave it, life is too short


Friday, June 18, 2010

Classic Cars and Cycles

1912 bike with Oil lamp
Got out in the sun with the Camera Club yesterday and was able to get some great pictures of some classic cars at a lovely hotel in Dorchester The George Hotel .One of the members of our club has a friend who is a member of a Classic car club that meet regularly at a town near where I live.She had secured permission for our club to go and photograph some of the cars.It was a lovely day the sun was shining although this proved to be a bit of a problem for photographing shiny cars.My breathing though, was not playing fair, after a few days of feeling relatively good and able to walk.Yesterday I was floored by breathlessness I was in two minds about going, but I bit the bullet and went anyway. Luckily there was lots of space for me to park and I was able to get close to where the cars were.
Parking is one thing I am always worried about when I go somewhere new,and although I have a Blue Badge I frequently find the spaces allocated, used by people I shall politely label ignorant and lazy they seem to fall into three groups, those with a I don't care if your disabled attitude,those who are to lazy to find a space and don't think it matters,and those who think I am only going to be a short while so I will be gone soon.
I am frustrated by these people who use disabled spaces but I will make mention it if I have the chance. I have been surprised by some of the reactions I have received. It seems that people think little of the needs of disabled people and on a couple of occasions I have received threats of violence.But as I tell my children I am more able than a old lady with a wheelchair to draw attention to this problem.Maybe if more people did point out to this minority group of idiots their mistakes they wouldn't do it because of fear of ridicule. This offence should be a priority for traffic wardens and supermarkets so that life is not made harder than it is for the disabled.
I have included some pictures of some of the great cars and cycles I saw so as you can get a idea about the day.I will be going out again on Saturday to the local carnival where our Camera club is holding it annual exhibition and hopefully taking some more pictures then.


Morris Built in Cowley Oxford

         Finally one of the members had a classic of my era to show off and was able to ride it around something that in my day was the bike to be seen on long before BMX had been thought of I hope this picture brings back happy memories to anyone who remembers the Seventies The Raleigh Chopper
Raleigh Chopper

Sunday, June 13, 2010

Transplanting Memories?

As I have mentioned on this blog before I am a member of a site for people involved with transplants in any way it is called Transplant cafe There I have meet people who have undergone, and people who are still waiting, for transplants.
It is good to talk with people about their experiences and be inspired by their stories about how life has changed after they have had a transplant.Just a while ago I met a great girl called Bree who received her lung transplant August 2009 about the time I was being listed.
I have asked her if I could put her blog on the list of people i follow so will be including it as she is recovering and able to do the things that I am unable to now,but hope to in the future.So please take a look as she has told me that she wishes it will inspire others who are waiting and raise awareness about transplants.
On the site there has been a discussion going on about the possibility of changes in personality after transplant and what those could be due to.There are feelings that this could be as a result of memories from the donor somehow transplanted with the organs. I don't know if this is true but I have heard it from several people on the site, that they feel that they carry with them changes that could be as a result of this. With craving for food they never liked before their transplant, including my new friend Bree, who's comment on the discussion and promoted this entry in my blog.
I watched a very good programme on channel 4 in UK which is still available on the channel 4 site if you are interested  in finding out more it is at Transplanting Memories?
Unfortunately one of the people in the film has since passed on but she wrote a book about her experiences you can read about her here  Claire Sylvia
I would personally be happy to have a connection with my donor, should I receive my lung transplant, that the people in the program seemed to have.
Please remember to look at the blog listed on this site as they are all people who's lives have been improved by a transplant or are waiting like me for the gift of life only a donor organ can provide.If you have yet to sign the register you can from the link on this site it takes less time than the time to send email but can change everything for someone waiting. 

Saturday, June 12, 2010

What was #Duncansdream why is it over? What now? I was at the Start and End

I was part of it at the start and part of the announcement of the end of #DuncansDream
As of midnight 10 June 2010 #Duncansdream is over, the man who started it Duncan Bannatyne (Dragons Den) said that he would discontinue tweeting about it at midnight.

What was #Duncansdream? if you are on twitter you may know already, but if you dont here goes, on twitter there is a convention that you can nominate people to follow on a Friday #FF, this allows people to gain more followers by recommendation.
On 4th June at 11.56 Duncan Bannatyne said "I would like to #ff all of my followers so all you need do is start following each other then we will all have 90,000 followers. Simples"
Then a funny reply by@iancreek
At 12.19 "What an excellent idea, I’ll start following your followers now. Should be all done by Christmas!
Time for someone to set-up a hashtag for this @DuncanBannatyne experiment any thoughts? #duncansdream maybe? by @iancreek

From this point the whole thing snowballed with duncan's followers tweeting the hash tag #duncansdream and asking to be followed.

By 18.56 on 4th June Duncan tweeted "Wow #duncansdream is now trending worldwide and it all started here"
Myself and 72 others retweeted this and I was hooked, I was part of a worldwide movement of people reaching out to one another
By 20.11 Duncan tweeted"Now #duncansdream is 2nd highest trending worldwide lets make it top
I retweeted this along with 100+ people and It went on for 6 days trending constantly

I had only a while earlier started to play on twitter and found myself fascinated by this trending subject and called out for some followers with the hash tag and it worked lots of people followed I ended up with lots of great people following me and now have many more people to connect with who had it not been for this phenomenon I may never have met it has been a great experience. My daughter who had not been on twitter before this week has now got 90 followers and loves twitter now.
The hash tag stormed for several days then after a day when twitter groaned and strained under the wieght of following back,some poeople were just collecting people constantly, I had decided against this, the spammers got worse and many people didn't follow back.It had to end somewhere.
At 15.50 on 10th June Duncan tweeted
"Yes it's true I won't use the #duncansdream hashtag after midnight tonight. All good things must come to an end look out for #bannatynesays"
39 people including Myself RT this reluctantly, and that was the end of #Duncandream as endorsed by Duncan There is still hope though.
Ducan tweeted today

"I am going to Follow, RT & FF 10 new peeps every day for a week, send me a tweet saying why it should be you #bannatynesays"
Now you know what to do!!

What was my dream then lots of followers No I have lovely followers and would like more but that was not the reason I did this On 4th June I tweeted

If everyone following #duncansdream registered as a organ donor that would be a good dream what do you think @DuncanBannatyne What do you think is that a good dream?

I did have a tweet with Ian creek about what next and said
@iancreek how would you feel about replacing #Ducansdream with #kickstart for a way for those people starting out to gain up to 50 followers
his reply was
@UKCybernaut I think your kickstart idea is a great one. The important thing is for people to connect with other like minded people.
I agree and now lets see what we can do about that welcome people and lets make twitter the place to communicate and meet great people and share our thoughts People power in action.
Lastly earlier today 85 people including myself sent this to our followers
dragonjonesCome on let's get @DuncanBannatyne over the line. He only needs another 233 followers to hit the magic 100,000 !!! RT (ps. he is 60 !!) 100,247 simples

I will follow anyone who is interested in Transplant awareness or I find interesting. But will not be following anymore people who are using the #Duncansdream.
People who dont follow back will go if they are not A) Famous or in the public eye or B) Have a skill to offer to help others waiting for transplants.I will follow anyone who is on the Wall of Life and puts a link to their photo that matches their profile picture in their tweet.
I do not wish to follow any companies of any sort if I dont follow them first. Any company that does will be blocked and if they persist reported.
Happy tweets.

Tuesday, June 8, 2010

No Twits its got to be Twitter

What a eye opening experience it has been over the last few days since I started to use Twitter.It is much more dynamic than Facebook. Thanks to #Ducansdream I have a great bunch of new followers and have had a few more hits on this blog.It is nice to think that people can get a insight into the life of someone on the list because when I talk to people about transplantation they say when are you having your operation? If only if was that easy,I hope that my blog is interesting enough for people to visit again but if one more person signs up for organ donation that is good enough.
My daughter went to London  to visit graduate fashion week at Earls Court as part of her school textiles course. She loved every minute, came back with piles interesting give-aways and was talking about a needing a new camera and bemoaning all the people with large DSLR who were blocking her view.she did get a few pictures on her phone but I understand how frustrating it is when you havent got a camera and something is going on you want to capture.I am debating the possibility of a new compact camera for myself maybe a Canon powershot s90 or a Panasonic LUMIX DMC-TZ10 as I am finding carrying the DSLR harder now but I would really love a new Canon EOS 550D and a macro lens but that is for when I get my transplant and can put it to good use.I may go out and see what Jessops can do local and if I can play with both to compare
but with Oxford parking is always a problem for me so I will see.
Finally here is a great site I came across for everyone who likes to draw and paint it is a online application that is a comprehensive as I have come across yet.
sumo paint  it is great, loads of brushes and effects completely free. I did a quick picture in 10 mins to show some of the thinks you can do but be inspired by some of the art on the site which is much better.

and another site I was told about by a friend and member of Transplant cafe cathy. It is a site implementing the latest HTML standard HTML5, this is the future of the web and the effects that can be produced are amazing you will need to be using Firefox 3.5 Safari 4.0.2 or Chrome,as Microsoft Internet Explorer may not view it correctly and is very slow. See what you think at HTML5 Experiments

Monday, June 7, 2010

Family make a Weekend

I had a great time this weekend I managed to see my eldest daughter who visited on Saturday she had been abroad skiing in France doing a season, and is going away at the end of June to a job in the Alps.It was so good to see her but never enough time to catch up on all that she had been doing. We have kept in touch via Facebook and email and I am glad that I am able to.

Life on the list for a transplant brings home to you what is important in life.
Family,the people you care about and your friends.They are the people who visit you, send greeting cards, phone and text you in the real world, who you talk to face to face.
Human contact is so important sometimes we forget that. When we say friends we may mean people who follow us on social networks on twitter or other on-line forums. This is true of young people, even my kids, who say I have x number of friends on Facebook.
That is not to say that those people cannot become friends.In fact some my friendships have developed online and given the restrictions of my illness it has been a way to connect.The people at Transplant cafe have been a great help with support when I have been turned down for transplants due to unsuitable organs,they know what I am going through.People at My Shutterspace where I have posted photos and have sent positive comment about them are great .Also the people who meet at the chat room of COPD international and supported me when I was in a wheelchair and had a tube hanging out of my chest wall despite the time difference to America.I would recommend all these sites,but I would recommend email more for relationships

One thing about the social media is the loss of person to person direct contact. The most enduring  relationship I have had has been though email it might be out of favour but try it again it works,whatever site you are on and is private, two people talking. I have been in contact with a very dear friend since 2007 via email (Sue you know who you are!) and we have shared the ups and downs of our lives and I am so glad.
Try this, ask your friends for there email or mobile number and talk with them direct, not to the public internet, stronger relationship develop that way and you don't have to watch adverts while you do it.
I see people on line craving fame, with a look at me attitude. Hoping to make money and get things easily or with little effort with the belief that when they have all these "things" and money they will be happy.It brings to mind a saying I heard when I was growing up in the punk era

"When the power of Love overrides the Love of Power and Money then we will be free"

A lottery win would do me no good to me now as it couldn't buy my health back.Nothing comes for free in this world,friendship is one thing that is,try developing  friendships that last face to face.
I watched a program on TV about a Irish man who received a Lung transplant and he said that getting a lung would be his lottery win.
I am still waiting for my lottery win and it nothing to do with money, thanks to family and friends who are keeping me going and the grace of God I will get there.

Saturday, June 5, 2010

Duncansdream Scheme to Guarantee of a follower for life

I was out on twitter yesterday and joined in with the trending subject of  Duncansdream started by Duncan Bannatyne to get people to follow each other I have got a few followers now and my dream would be that I can make those followers aware of the position of people waiting for a transplant.
I started this blog to let people understand how lung disease has affected me and how it feels to be waiting for the gift of Life a new set of lungs.I am nothing unusual,Retired Nurse,a Father,a Husband and you may not know me much but you can help.
The time it took to tweet for followers is how long it takes to sign the Organ Donor register you could be a hero to people like me.check out this blog there is a link to get to the organ register on this blog you can post your picture on the wall of life.
Lets fill that wall with our pictures my picture is at Wall of Life

You and friends you retweet to could change lives please help by reweeting this link to others and lets see if the dreams of a new life can become real.let us see if Duncandream could increase the amount of people on the register rather than just on your folowers list.

If you dont feel you dont want to yet read and follow this blog and others on the blog list and find out more about how life is for people waiting and how it can be better with the gift of new organs.
Most people want to leave something after they have gone in a legacy to others This could  let you leave something much more precious than money.
The Legacy of a new life      

The only guarantee of a follower for life

Thursday, June 3, 2010

Peacocks in the Woods

Went out with my children today as it was a nice day we went to somewhere that is lovely this time of year Harcourt Arboretum.
I took my camera and we were able to get some good photos.I was unable to get far due to my breathing even though it was nice, it was a day that even walking a short way was causing problems.I loved being out in the sun and was accosted by one of the peacocks that was resident there,the kids were good and we had a nice day.
Following up on a previous post the news continues to be good for Rachael Wakefield who i can confirm has now gone home to start a new life with new lungs you can keep updated on her progress at Anything But Ordinary this is one of the blogs I follow on my blog list.Another person who's blog I follow is Jodie Smith is a lady with Cystic Fibrosis who is  waiting for a heart and lungs and has just received her first call for a possible set of organs that unfortunately was not successful.I wish her all the best in her wait and hope that the next call is the one.
Please remember that for all of us these calls will not happen without people brave enough to be donors. If you want to register in the UK please follow the link on this blog, click on the flashing heart. If you are already registered you can add your picture to the "Wall of life" which displays pictures of people registered as donors making up a mosaic of colour on the face of  a young girl  Louisa McGregor-Smith saved by a heart transplant in 2007. Click on the link on my blog to see my face and to find out more.
Finaly I have posted up some of the pictures I took today for you to look at Oxford University do a lovely job maintaining this great place which is part of Oxford botanical gardens and visits for disabled people with their carer are free.Harcourt Arboretum and Botanical gardens

One of the peacocks
Taken by my Daughter

A colourful beetle

Tuesday, June 1, 2010

Time passes by

Bank Holiday Monday was a better day and we did get out as a family to Oxford city, but due to the layout of the town centre and the provision for disabled visitors the places I can park are limited. My daughter did get to look in some shops and my son was able to look at some clothes but what they wanted wasn't available.I walked a short way into the town from where the car was but didn't go far.I remember when I was able to walk up and down the town centre without thinking about it.We went to the superstores on the way out of the city and I spent some time playing with the latest cameras in Currys and managed to get the latest catalogue for Jessops but my trips into the town centre are rare now, and shopping normally means large out of town shopping centres.With the parking charge increases that have just been announced by Oxford council lots of local people will feel the same and Oxford City will be left to tourists and students.Or you can now take a Virtual Tour of Oxford and then you dont need to go at all.
When I got back I was on the internet when I came across the following  photo that encapsulates the passing of time in visual form perfectly it come from a website of a guy called Caleb Charland 
He says of his photos, 
Each photograph begins with a simple question “How would this look? Is that possible? What would happen if…?” and develops through a sculptural process of experimentation.
As I find hours seem to slip away so quickly and another day is over again this photo says it all.
Fifteen hours