Three Year Wedding Anniversary

Time is moving on quickly of late with lots happening in a the space of a short time. Today was my third wedding anniversary, remembering the day I married is hard. 

I had to use my oxygen before I was able to get out of my car and walk the short distance in to the Oxford registry office from the disabled spot outside. Our simple ceremony with just our our two witnesses was over quickly and there was no party.I needed to use my Oxygen all the way home afterwards.

It marked a turning point in my life. 

I had just gone on the list and had received two calls within one month of being listed  

First call   Second call 

I had realized that I might not survive the process of transplant or the wait and wanted to put my affairs in order and on those first couple of calls I was very worried about outstanding issues with my pension, tenancy and provision for Liz and my children.

Three years on and life is totally different 

I am so much better and looking forward with hope, thanks to the donor who has given me this chance to live a new life and honor his memory.I am now able to do things with my wife and children and support them like a husband should.
Liz and I met 25 years ago and always said that we would get married, but just didn't get round to it.Life moved on, we had kids and still ,despite me going down on bended knee years ago in the middle of the staff social club at my old hospital,it hadn't happened.
I was staring death in the face when we finally said "I Do" and it all became clear, Love , friendship and happy experiences are the things that matter.
I really hope that I will be able to give my beautiful wife many more years of all of these things

I love you so much Liz and I'm so glad that you have been there with me though all these 25 years. 

You are my rock and I hope that the years yet to come will be even happier

Since my transplant lots has changed and just last week we finally placed my mums ashes in her final resting place in the local church garden of remembrance in St Mary the Virgin, Kidlington. It overlooks the open countryside and I finally felt a sense of peace for her since her passing. I draw comfort in the fact that there will be a space for my ashes with my mums should I wish it when the time comes.

      

I was forced to think again about my mortality as transplant is extra time not a total cure.Because of the medication I take and risks with immusupression my time will shorter that it may have been.

I hope that I have many more years ahead, but I have resolved that the next few years I will going forward firing on all cylinders and making the most of the health I have got now.

I will be looking at holidays for next year and some travelling that I have put of for a while.I missed out on Glastonbury tickets this year:( But I am looking into more transport and Christmas will be a big one this year as Liz will be off. New year I am going to try to  have a proper night out if I can, Liz will be working on 1st.But before that my daughter will be turning 18 (this month) and Liz has a birthday in November so I will be looking forward to spoiling them both.

finally I have entered my first competition at the camera club this month and so I thought I would include the two pictures that I have entered

Hang On A Minute Lads, I've Got A Great Idea....

Red Arrows over Hastings seafront 

They were both taken in Hastings in the summer fingers crossed they do well, I will tell you how they do in my next post.    

Seaside Memories and New Beginnings

I have been away for a while but I am back now.

My mums death was still in my mind but I resolved to leave the issues of the estate and sorting out that will still needing doing until I returned to Oxfordshire.
Managed to get a couple of weeks by the sea with  Liz's mum in Hastings. The weather was kind to us,but although things conspired to disrupt our holiday, like my Bi-pap machine braking down just before we left!
We managed to get some much needed rest bite from events that had been happening before we left.But I found myself remembering past holidays with my family in Devon and the Isle of White now that both of my parents have gone and I felt a bit lost and alone.
With the Olympics happening at the end of the holiday I thought I might get a picture of the Olympic torch relay in Hastings, but unfortunately we were travelling the night when the torch came into the town so we missed it. I managed to watch it go through my local area but more importantly a friend of mine who had a double lung transplant just before mine was nominated and carried the torch though Reading

Richard Burbedge  

Also competed in the British Transplant Games and got Gold an inspiration to all those who have been transplanted  

While away I was happy to find out that that the Red Arrows were to fly in Hastings as part of the town's  Pirates Day This was an attempt to break the world record for the most pirates in one place. They were successful with 14,231 pirates gathered on the beach, dwarfing the Cornish town of Penzance's previous figure of 8,734, allowing Hastings to reclaim the title it previously held in August 2010.
I was really happy I was able to use my new camera to get some shots of the Red Arrows when the performed over the sea and have included a photo for your enjoyment.

I was also able to get to the pub on a couple of nights while I was in Hastings it is not something I do much and haven't had a drink for a long while prior to this but I spent a lot of time in a pub called the "pig in paradise" on Hastings seafront while in there I was happy to find out about a friend of mine on facebook who had been called for her transplant at Harefield Hospital  Kimberley Liane Kneil
 who writes "Being Kimberly" in my blog list. Thursday 26th July 2012 she went to theatre to start a new life thanks to a selfless donor and their family and is now doing really well as this photo taken yesterday shows

Just shows how a transplant can transform lives 

Other good things have been happening... 

Since I have have been back from my holiday I have started a weight loss group that is supervised by dietitian and psychology and will run for a year. During my first couple of weeks I didn't lose any weight but I   did committed myself to go swimming as one of my activity goals.This is something I haven't done in over ten years. I was a bit apprehensive at first, being overweight and having all the scars from various chest drains I had before and after the transplant I felt self concious.But as one of my goal post transplant was to swim again "What do I want to do when I get new lungs" 

I went with my son and did it.

It was a bit hard at first as I was still not confident with my new lungs in the water but although at first I couldn't do a full length, after a while I was able to swim using breast stroke and did a few lengths although I had to rest after each 25m.

Things have improved since then and I am now losing weight slowly and swimming twice a week I am one doing One Kilometre per session (40 lengths) not bad after my first month and only 8 sessions :-) I am able to do 2-3 lengths before resting I am doing the crawl a bit, but this is something I will have to work on as I find this hard on my lungs at present and have to rest after one 25m.

I had a good visit to Harefield and was seen by kidney consultant who told me my renal function was solid my blood pressure was great and told me to come back in 6 months I was also given a clean bill of health by transplant doctor and three months off clinic.While I was there I had the chance to meet Kimberley whom i spoke about earlier who was waiting to be discharged and I also meet another Lung transplantee called Dave Southam I follow on Facebook. It is always good to connect with fellow Tx ers and meet them in person.

My brother and I have been continuing to sort out the aftermath of my mothers death and one thing that brought it all back was my birthday on the 30th August. I wished that she had been there to celebrate it with us. But  I am sure that she was present and watching over us as I spent a quiet night in with the family. 

We had a Chinese take away and everyone enjoyed themselves.I will be going out at a future date with my wife for a hot Indian or Thai meal and a drink as the kids don't care for very spicy food.

One other person I thought about was my donor a 45 year old who changed my life and allowed me to celebrate my mother's 80th birthday with her before she died, see my children complete there secondary education and move onto college and start to live the next 50 years of my life healthy and happy.

I will always be eternally grateful to him and his loved ones for allowing the donation of his lungs to help me live a new life! 

If you would like to help someone live after your death and you haven't already done so, please

  Sign the donor register 

Then let your loved ones know what your wishes are so that they will know what to do. 

Spare them the uncertainty you may regret later it if you don't do it                

I have resolved to to spend the next year of my life on revisiting my life again going to places that I went as a child with my parents,now they are no longer with us:(
I  particularly want to visit Brixham,Paignton,Totnes where I holidayed as a child.Visit my family, cousins in Bournemouth and up north and  my Uncle in the Isle of White.I really hope that I will also be able to go to Glastonbury festival next June but there are some logistical obstacles to overcome to achieve that!
But I do intend to fulfil my list of things to do with new lungs and hope that I will be fit enough to do some fund raising and find some voluntary work or employment.Then I hope that I can set myself new challenges to push me forward to greater achevements.

Watch this space because great things are coming I feel sure!!!

Older and wiser

My holiday is over and time has ticked on. I had a great time and enjoyed being by the sea again, for my wife it was a chance to catch up with her family and for me a chance to revisit the old haunts that I frequented when I was training to be a Nurse.
I was so aware of the differences that a year and a transplant had made to the visit and although I didn't manage to do as much this holiday some things I took in my stride that I could not manage last year.I will talk more about these later.
One thing I did when I got to Hastings was to buy myself a compact camera to use when I am out and about I had tried out a couple and settled on a Nikon P300 which I found was the best at image stabilisation which I need because of the shakes I get through anti rejection medication I have yet to settle on a DSLR to buy so I felt that this would be a good stand by second camera.

During the first week we went to Eastbourne to attend the annual airshow and I was able to get some great photos of the planes I used my Canon DSLR to take them because of the zoom required for good pictures.I got many nice picture of planes that did a flypast over the pier

Spitfire

I was also impressed by the aerobatics team that did a demonstration

 My family were shocked by the noise of the F16 that flew over

Finally, later than planed, we were treated to the the premier aerobatic team who were only able to do a fly past due to the weather conditions having deteriorated by this stage

Red Arrows

 The rest of the holiday was filled with a lot of walking up and down hills which I coped with better than I thought I would and I was able to spend a day at the sea in Eastbourne on one of the days when the weather was good I had hoped to walk along the beach and get some pictures in some rock pools but alas it was not to be as the tide times that day did not allow it but I did get a picture through one of the groynes looking towards beachy head using my new camera

Holywell

I also was able to take some pictures of  Brighton and the famous pier using the easy panorama function which I think you will agree does a good job

      One other trick that my new camera had in store was slow motion video and so to illustrate i have included a small piece of video of some seagulls on the seashore 

I am so grateful to have made it back to Sussex again and without my transplant I feel sure that I would not have had this opportunity. I sat by the sea drinking coffee and realised how luck I was to be able to breath in the sea air with my new lungs.
I gave thanks to the anonymous 45 year old donor who selflessly left me the gift of life 10 months ago that has enabled me to have a quality of life again that I thought I had lost forever. I have recently moved into my last year of my first half century. The experiences I have been though have made me realise how lucky I am to be writing this blog.
I follow people who have not been as lucky as me and are still waiting such as Victoria Tremlett she is presently deteriorating and desperately waiting for a transplant you can follow her blog on my blogroll

Past the Point of No Return she is needing a transplant very soon or she will die.

She is one of the people who is in danger of dying while waiting,

as three people do every day in this country  

If you are reading this and have not signed the donor register please take the time to click on the flashing heart in the right hand column of this blog and that will take you to NHSBT website where you can add yourself in a couple of minutes.Then you will receive a card in the post to carry with you in your wallet or purse.When you do, please speak to your next of kin about your decision so that they know what you want  as they will be asked about your wishes.

Holiday - Let the Games Commence

It all systems go for my holiday:) I hope to spend two weeks on the south-east coast in Hastings this will be my first holiday since my Transplant and I am looking forward to meeting up with my wife's family and hear the news.
I must be truthful when I say that I did not expect to make it to see another holiday by the sea last year before my transplant. The organisation that was required to get an oxygen supply and equipment I had to use such as the wheelchair and oxygen bottles made the whole process very stressful for me and the whole family. this year it will be better as now I am able to tolerate the hot weather and the inclines that I will encounter I will still have to carry a bit of stuff like my Bi pad machine and nebuliser and the various pills that I consume each day but I will be able to do many things that I  avoided last year.I hope that we will be able to attend the Eastbourne Airbourne Airshow and I will try to post pictures that and of my other adventures if I can.

The other thing that has happened is I have started my pulmonary rehabilitation course at the local gym unfortunately due to me being away I will miss some of it but this will continue till September when I get back.I must be honest when I say I was worn out when I had done the first two days. I found it great to be able to push myself and was able to do much more than I thought I would, so I was glad.
My wife has also been referred  for fitness training though our GP surgery so when I have finished on the rehab I will start to go for supervised fitness sessions with my wife if she wants to so we can both get fit again.

I have also been inspired by another transplntee who I know, who is presently at the UK transplant games and has managed to achieve 
Silver Medal in Archery with a score of 278, and a Bronze Medal in the 5k run.

he said  on his Facebook page today "So proud to run as part of the Harefield CF 4 x 100 metre relay team today. Running for everyone with CF, everywhere." 

Congratulation to  Richard Burbedge @AwoogaBurbs who had several problems on his way to the games including a serious sprain to his ankle and a visit to hospital that nearly put his plans on hold so I am glad that he achieved his aim to represent his country  But most of all his win  represents the gift of life his donor gave him and me that allow us to live better and more full lives

 

This year at the transplant games 15 transplant  patients from Harefields Hospital are taking part in the  British Transplant Games 15 people who lives have been saved by donors who signed the donor register HERE

There is a facebook page you can visit to find out more Westfield health British Transplant Games 

If you would like to know more Transplant Sport in the UK may interest you @TransplantSport

Great Britain Transplant Cricket Club will also be of interest @gbtcc   

There is also the Northern Ireland Transplant Association  at their twitter account @nitransplant

 So I will say happy holidays to you and go to bed as I  have a drive to do tomorrow, hope to post more and some pictures of the seaside soon :-)

Holiday is over Back on your Heads!

Holiday is over and after a three and a half hour trip back that was very trying to say the least (usually two and half hours) we arrived home.The first night we just crashed out and the next day the grass needed cutting and we did some shopping for all the things we have run out of.

Now normality has returned with the usual moaning and squabbling from the kids and a list of things to do that were put off before we left.I rang Harefields hospital and told them that we were back home and my mother visited and I gave her the gifts we had bought while away.

Why the strange title for this post? it comes from a joke that I heard and still makes me laugh now;

A man dies and ends up in Hell and the Devil says to him you have three choices of where you want to spend eternity and points to three doors.
The man says can I have a look first before I make my choice the Devil agrees
He opens the first door behind is fire,brimstone and people burning in agony."Don't fancy that" says the man,
He opens the second door there are people being whipped and beaten."Don't like the look of that"he says
He opens the third door and there are loads of people sitting waist deep in sewerage drinking tea.
He takes a moment, then he decide. "It has to be the third door" he says.
He goes in the third room and  the door closes behind him.
"Right" says the Devil, "Tea break is over now back on your heads"

I am not suggesting that my life is like that joke, but life has a way of throwing up those sorts of unexpected outcomes at us everyday and it doesn't matter if you worry or not they still happen.
People often say "I hope you don't have to wait to long for lungs". But people never say "I hope someone will die soon".But the two statements mean the same in the real world.
Human beings are very good at protecting themselves from the truth of their own behaviour ,but worry about things that they can't do anything about.

Well my birthday is nearly here and 8 days later I will have waited on the list one year. A interesting but stressful one but one filled with new experiences not all fun.
I have done a lot more than I thought I would be able to.Met some great people online through Twitter and other sites I use. I have talked to famous people and ordinary people with extraordinary lives. Followed three people who have had transplants watching them recover,some quicker than others.Waited with others like me still to receive the gift of life.

Started this blog and continued to write it! Got published on another blog as a guest.Started to run a website, learning a new format and extending my knowledge of the web.Got commended in end of year competition in the local Photography Club. Hoping to take more winning photos when it starts again in September.

The only down side to this time of the year, apart from being one year older. Is winters approach,that is something I dread,but with the advent of the Autumn, I hope though I can get some good pictures :-)

On that note I thought I would post some of the pictures I got of Brighton on our last day out before our holiday finished.

Brighton Pier

Walk on the Pier

The pier from the beach

Seafront

Watching the waves

Not quick Enough

Brighton Pavilion

Fountain

Eastbourne pier & Memories of Whitebait

Eastbourne from Beachy head

Our holiday is going well the weather is still being kind and we have enjoyed the time with relatives catching up with the news.Our most recent foray was to Eastbourne again.This time to the pier.we spent the afternoon having a walk up the pier took tea and coffee in one of the cafes and I played some pool with my son in an games room in the arcades.
Playing pool brought back so many memories as I spent many hours during my time in Nursing training playing pool with a good friend in my training group.I was playing pool the night I met my wife in the social club of the hospital I trained in.Although the hospital  is now long gone, our memories are still strong, my wife even had a go at pool when we were playing, to show my son that she could play.
After we had finished we went to the town to find somewhere to eat and decided on a lovely little Italian restaurant where we had some lovely pasta and I found another memory booster on the menu.
Whitebait-small flour coated and deep fried whole fish. I have been looking for these for ages and was over the moon to be able to eat some again,I must explain why.
When I left Sussex and returned to Oxford I did so to be near my eldest daughter. The relationship with her mother had ended and she had returned to Oxford about the same time as I had got together with my wife.
I had made a commitment to continue a relationship with my daughter despite this.So when a new Regional Unit for Forensic Care opened in Oxfordshire I applied.
I had a great job in Sussex with good promotion prospects and my wife's family were local. But I felt that my daughter was more important and so I applied to Oxford.
I was offered the post and moved into the hospital.But before we opened there was a period of training this allowed us to work 9-5 for a few weeks while we sorted out the new clinic. A time for team building and sharing this was done in a local pub called the Waterloo (also now gone) just down the road from where I live.
We would spend our afternoons drinking and getting to know each other and having a great time.
Although I didn't particularly want to work in Oxford this was a good time in the Forensic Unit's history when we started out, as we had high hopes for the future.I remember fondly one of the specials served in the pub and a favourite of my ward manager Prem Calloo was fried whitebait served with chilli sauce washed down with lagers and dark rum, many a happy afternoon was spent there!
I was able to buy whitebait in the past, but have not seen it for sale for a long time, so I was so pleased to taste it again.My son tried it and he liked it as well.
Unfortunately Prem is also gone now, he died of a heart attack in front of me in the Clinic we started, just a few years later. One afternoon when we were working together he just dropped dead. He has a headstone in the local graveyard near Agatha Christie and is remembered fondly by me, when I eat whitebait, always with some hot sauce!

All in all this holiday has been steeped in memories for me and a realisation of the passing of time, it may be because I am getting near my birthday at the end of August, and birthdays of late tend to be reminders of the passage of time.But I do hope that there will be many more different memories yet to come after my transplant and maybe a few to revisit again, many of those will be in Sussex.

Whatever happens you cannot go back you must continue forward whatever that brings.

I thought that a couple of photos would be nice after that deep and rambling trip down memory lane so here goes;

Eastbourne pier

Beachy head

Sussex seagull

Sussex in the Sun

We have been on holiday four days now and most of the time the weather has been kind to us.One day it did rain but on the whole, although not the height of summer, there has been quite a few sunny spells.
As well as the Airbourne show in Eastbourne we have spent a day walking around the old town in Hastings where there are lots of gift shops and small interesting shops to look around. I managed a few photos,and with my son. Also attended to his addiction to the arcades, we had a good session spending only a little money to win several toys and tat for my children. Rock and sweets have also figured highly on the list of  must haves. I have forfilled my wish to eat fish and chips in one of the shops near the Stade which is in the fishing fleet end of Hastings and buys fresh fish locally yum yum!
The only fly in the ointment was my Mobile Broadband connection it seems that the USB stick I had was incompatible with my computer (Vista). So it kept crashing the computer every time I used it.After a trip to Carphone Warehouse and 45mins on the phone to T Mobile in the shop a new Dongle arrived via DHL the next day! I am most impressed by the excellent service from T Mobile.
So I am now able to get on line and update this blog. Keep up with people online which is becoming a essential part of my life of late and it has also allowed me to send out some pictures to people on Twitter of the sights in Hastings.
So I thought that I would share some of the pictures that I have taken since we have been here to give you a flavour of our holiday so far. Hope you like them there are also a couple on a photo slide show that I made that you can find here Sussex days and sunsets

Bi plane

Wing walkers over Eastbourne pier 

Above a couple of pictures from Airbourne gives a flavour of the day

Hastings

Beach Huts

Baby Seagull

Hastings from Bexhill