Tuesday, 6 January 2015

There but for the grace of God go I

Being a member of the cystic fibrosis and transplant community is a huge honour, to know incredible people, to follow their journey's, sorrows and joys, share in triumphs and have a degree of understanding that no one else who haven't experienced these things possibly can. CF sufferers aren't able to meet much face to face as they can cross infect each other with dangerous bugs so relationships are formed online and become just as strong to us (if not stronger) as people who see each other physically on a regular basis. They are supportive, caring and have created some beautiful friendships.
 There is a black side to this though. You see a lot of friends suffer, battle and die. It's a risk of making such friendships but makes it no easier to handle. I will be 28 this year and off the top of my head I've lost at least 9 good friends plus a lot of faces and names that while not talking so often to you still follow their journey and stories and it still hurts to hear that they have passed.

I think the common misconception is that you expect it to a certain extent when dealing with serious illness, that friendships online can't be THAT close, that you somehow get used to it. But you don't. It hurts, a lot and aside from the loss of a wonderful person, it makes you fear for your other friends and for yourself. It is a shock reminder of what a tightrope CF and transplant are, one slip is all it takes before things tumble away and that is bloody terrifying.

Recently the world has lost two bright souls. Sinead, a lady I didn't know until last year when she got in touch and asked me some advice as she had been having biopsies because of EBV, the virus I have that gives you a greater chance of developing lymphoma. I was lucky that my biopsy came back clear, sinead was not so lucky and was diagnosed with post transplant lymphoma. A lymphoma which is surprisingly common because of our harsh immunosuppressants. Sinead regularly contacted me asking how I was, what I was up to. She was caring, friendly and truly grateful for the time her transplant had allowed her. I was gutted to hear that just before Christmas she lost her battle. She was a lovely, kind, generous woman who in her last message had simply said that she "was finding things tough".
We also lost a major member of the transplant community, Emily Thackray. You may have heard of her as she campaigned for CF and transplant awareness with a fiery passion. She did tonnes of media work and with her friend set up transplant charity LLTGL. Emily was everyone's friend. A pink and sparkly force to be reckoned with. I followed her blog and journey before I knew I needed a transplant. Her blog inspired me to start this one.she had some bloody hard times, I met her in hospital when she was very sick, I can remember her walking slowly waving to me in a sparkly pink glory. She always had a smile for you and supported everyone. She got her transplant 8 years ago and it was a privilege to watch her recover and get stronger, to see her journey progress as I started my own. Later Emily visited me a couple of times for LLTGL work while I waited for my transplant. She was also one of my first visitors after transplant assuring me it would get easier when she knew I was struggling through a hard recovery. Emily used every minute of her time supporting, helping, caring loving others and making the most of her amazing gift. She got married bought a house, worked as a teacher, and recently thanks to a surrogate became a mummy to a beautiful girl called Sophia. It broke my heart to see her struggle in the last few months with pneumonia, see her improve then plummet again. She received a second transplant but this is an even more difficult operation second time around with many possible complications and recovery longer than the first. Unfortunately these complications became too much and the woman who was so bright, resilient and beautiful passed away. It was only then that you realise the extent of how many lives she truly touched, there were so many amazing stories. She will be greatly missed.

These weren't just online profiles, they were people, brave, caring wonderful people. People I called friends as did many others and they are missed and grieved as friends are.

Being around lives that hang in the balance whether when Ill or waiting for transplant or post transplant is a strange experience. It's uplifting, inspiring, wonderful, difficult, frightening and heart breaking. There is definitely a sense of worry and "there but for the grace of God go I". There's also the stories that inspire and you hope will live on with friends when you are gone. For me it certainly reminds me to live as much as I can, to try and make people happy and do good deeds when I can, and makes me value those who support me. Unlike some I know, I tell people a lot more how I feel for them, I let them know they are loved, or that I appreciate their friendship or value them. And if the one thing my wise friends leave behind its that gift.

Friday, 14 November 2014

The great debate.

Ok so I'm still just getting back into blogging again so I'm easing myself in gently (or not as the case may be!) without talking about my life specifically. A couple of weeks ago my friend Carla and I were featured in the Daily Mail in a debate about Organ Donation and the opt in or opt out situation.
Obviously because its for a paper, they needed to add a bit of drama to it so we were pitched arguing opposing sides, Carla opt in and myself opt out. Read it here http://www.dailymail.co.uk/health/article-2810163/Daily-Mail-End-Donor-Shortage-Campaign-organ-donor-register.html

Now in reality I do support opt out, but the thing I support most is organ donation. Whether its opt in, opt out, or whatever I want to see more people getting the organs they so desperately need, not losing my friends who haven't been as lucky as I am and generally more results because I know personally how transplants can save and transform lives.

I feel I need to clarify and go into more detail than the article was able to cover. So yes for the sake of the article I had to state one way or other and sitting on the fence wasn't an option. The truth is as I said above to get more awareness of organ donation and more successful transplants. I think there are a lot of misconceptions about the opt out system which despite touching on in the piece you can see didn't get through to readers based purely on the comments section of the article.

The opt out system is still a CHOICE is the first thing I want people to realise. As the name says you can opt out. So if you have strong feelings about not being a donor for whatever reason, or you only want certain organs taken then you still have that choice. No one is taking that away from you or governing your body by the state. In this respect you have as much of a choice as you do with the opt in system.

Point number 2 is that there are problems with both systems. For an opt out system to work we would need to massively invest in the system. It would need funding for education, to make sure everyone understood the way it worked, that they could opt out, how to do that and to reassure everyone that their wishes were respected. It would also need huge investment into the infrastructure of transplantation, if you are suddenly carrying out more transplants you will need; hospital beds to accommodate patients, more ITU beds, More ITU staff (nurses doctors, anestetists, surgeons, etc), you would need more specialist transplant consultants and bigger transplant clinics, more drug production, physios rehab etc. to name just the tip of the iceburg. If opt out was introduced without these measures then it would wholeheartedly fail.

However our current opt in system also has faults. Apathy being the main one, the people I meet that just haven't got around to signing up are huge believe it or not. Why would you think about it when you aren't effected by it? Death is a taboo, people worry they wont be saved if they are donors, that the hospital staff might not treat them as well, that they just aren't sure what they want after their death, that talking about it might make the worst happen. It's sad but true and completely understandable. But being involved in the transplant world for so long shows that the information to settle your mind is out there if you want to look for it. I was talking to someone the other day and we were saying that it is your last wish that can be fulfilled by your family. To give (or not) your organs is your final decision, which should be made clearly by you. Sadly in most cases your family will decide this for you. Most people don't know that currently your family can over ride your decision about organ donation. So if they don't know that you wanted your organs to be donated and are on the organ donor list, they are able to say no when asked. That is a loss to others and to you as no one should make that decision but you. Therefore it is so so important that you make your own decision and then let your family know what you want.

We need donors, so many lives have been lost this year because of the lack of donors and so many lives are on hold waiting for that call that can change their world. Neither the opt out or opt in systems are perfect and for the record I do believe that right now we have the best system in place for where we are, we just aren't ready to commit to what opt out needs yet. However what also strikes me is that we need more education, awareness, discussion. If the article I did can that and get people thinking about their wishes and even possibly signing up then that is the absolute best I can hope for.

Its also part of the reason I wanted to start this blog again, to keep campaigning, spreading the word and showing what life after transplant is like. You never know what a difference it can make.

Tuesday, 11 November 2014

So, what would you like to know?

So haven't written on this blog for nearly a year. My blog for a long time was a real life line to me, somewhere to vent, cathartic to write, educating and awareness raising, something I could do when I  everything was falling apart for me. I made friends, helped others going through transplant and shared in peoples lives all of which was surprisingly unexpected but wonderful.

Then after transplant, it got harder to write, I wasn't in a good place and didn't want people to think I wasn't absurdly grateful for my precious gift but at the same time, it was a huge, frightening, all encompassing change which is still full of problems and challenges but without someones generosity I wouldn't be here to even contemplate these issues. So for a long time I didn't feel able to write.

But lately I think that maybe I still have something to say. And maybe you still want to listen. Anyway I'm going to try and start blogging again. About life now, after transplant, the good, the bad and the ugly. There is  a shocking lack of knowledge about life post transplant which is often seen as a magic cure, which it isn't if I'm brutally honest.

So I would like to know any topics, questions, issues you'd like to see spoken about here. I can only speak from my experiences but would love to write again (I've missed you) and want to address things you'd like to know.

So bombard me, there is no question to embarrassing or stupid! xxx

Tuesday, 31 December 2013

2013 and beyond!

Shocking lack of blogging from once again, BUT I couldn't not write you all before the start of a new year.

I hope you all had a very happy Christmas, ours was different, hectic, and above all lovely! Whatever you did or how (if) you celebrated I hope you were surrounded by the ones you love.

I'm not quite sure how to wrap up 2013, when I think about it I went in with pretty average expectations and a few highlights to look forward to, but it ended up shaping up as a very important, wonderful, year. I finally, finally graduated, gained a first which I never thought possible and made the walk in my cap and gown that I had waited so many years for but never expected to do. I had an incredible weeks work experience on Les Miserables which was one of the most joyful experiences of my life, I cannot describe what it meant to me to be there that week with so many, happy, kind, welcoming faces who loved the show and theatre as much as I do. I went on my first holiday alone to Euro Disney for my transplant anniversary (more updates about this next time) a huge confidence boost for me. I have really improved with my cake skills and grown a small business of my own. I've made many trips to London widening my net and again building more confidence than I've ever had travelling, its still hard a lot of the time but I'm doing it. There have been hugs, days out, time spent with my family, I've drunk numerous teas, cocktails, eaten and cooked some yummy food, met some great people and had a life I can actually live. I've done more awareness work and hopefully will get more opportunities in the future as it's something I love. Some things have worked out differently than I expected and some paths have had to change but that's not necessarily a bad thing. Even me who likes to control everything sometimes has to change, but so long as its the road leading to where I want to go, who cares?

I have met lots of new people: some acquaintances, some new friendships and some friendships that I think will last the distance. A lot of relationship's have changed, some have ended, some that were rocky have improved we shall see what becomes of them, some people have stepped up and been there when I've needed them and some have fallen to the background, some I need to try harder to build on in the new year and I think I have met some truly special friends. The most important thing is I'm less stressed about them now, if it's meant to be it's meant to be, what's important are the memories we make along the way.

In other ways it has been a very hard year in some ways. I was finally able to admit that I've been suffering with depression and high anxiety, I hope that this will be made easier for me to cope with next year so I can enjoy my life the way a truly want to. A huge tragedy has been the losses we've experienced in the transplant community. It may sound silly to some people, that most of the interactions I've had with these people have been  online however as I'm many others will testify, this doesn't make the connection any less. It's hard to hear of someone struggling and passing away, knowing you'll never text or tweet them again, knowing you'll never chat or nod to them at clinic. It's also hard to see the negative side of organ donation and the problems that can develop, knowing one day they will effect all of us. These people are so many to mention so apologies to those who aren't named, Josh, who I met in hospital and came to reassure me about a procedure I was having, Nicola, who loved her family and helped so many other transplant patients with her charity work, Josie, who always had a beautiful smile and kind words in clinic, Gareth, the brother and son of a wonderfully kind, caring family, Katie, Clare and Gerard who all played a big part in the CF community.

Another wonderful lady. Melanie also lost her fight with cancer this week. I met her once this year which I am so incredibly grateful for, but we kept in regular contact via email. She was a brave, beautiful, caring, smiley, lovely lady with a real zest for life. She fought bravely and always made time for others, she was the wig mistress on Les Mis and although off work arranged for me to go and see her "wiggie" friends, my best moment while there. That was her, always thinking of others and that was shown in the outpouring of love towards her and her family. They have all played parts in many people's lives, more than they probably imagined. Like the others in past years, Jen, Jess, Sam, Robyn, Nick, Sarah, Portia, Rachael, Craig, Paul and the many others, they will never, ever be forgotten.

I have struggled a lot with so many losses and found it hard to cope or understand the senseless of it. Sometimes I have wondered if would have been better of saving myself the hurt and never meeting them but that would be completely disrespectful and unfair to all those little interactions that in the grand scheme seem nothing but really meant something to me, I wouldn't give those up. Someone told me that while we are still here we have to shine the light for those that aren't, its very true. So while remembering them I will try to keep putting happiness and kindness into the world on their behalf.  After all one person can change so many lives, look what my donor did for me.

I've been quite scared for 2014, 2013 was a hard one to top. But I was sitting here last year worrying about the same thing. I think I've learnt (to some extent, I'm a stubborn lass) that you can't pre-empt the good things that come our way, they are usually hiding round the corner when you least expect it. My transplant definitely taught me among other things that its the little things that mean the most; a cool drink of water on a dry mouth, being able to walk around freely, the amazing feeling of a hot shower, the taste of your favourite food, the comfort of your own bed and the hug from someone you love. Enjoy them, because if they disappeared I guarantee that these would be the things you'd crave.

Anyway enough waffling, what I'm trying to say is,  I hope you all have a fantastic new year celebration whatever you're doing, and that the new year brings you happiness and health thank you for your incredible support this year, I am eternally grateful. Goodbye awesome 2013 and thanks for the great times and memories. 2014 let's see what you've got!

Last word as always goes to the indescribably kind, wonderful, generous, incredible, beautiful, person and their family who gave me this unbelievable gift of seeing this year, I can never thank you enough but I will try to make you proud.

Friday, 27 September 2013


There's a title I never thought I'd write!

As most of you know my road to graduation has not been plain sailing. I suppose it started when my health dictated that I give up my work as a special needs teaching assistant. I was on the list for a double lung transplant back in 2007, and couldn't face sitting at home with no reason to get up every morning. I had always wanted to go to uni but my health was never up to it. I looked into the Open university and the rest is history. I started on a childhood studies pathway but as part of the degree I took a Children's literature course. I loved it and realised I would like to change to Literature, it would be more useful in my future life and was something I had enjoyed at school. It was a hard decision to effectively start from scratch but I knew it was the right move.
Over the next 5 years I experienced some of the worst times of my life. With my health getting progressively worse, waiting for transplant, false alarms, constant pain, fatigue, extreme breathlessness, and various other problems study became harder. Many times I threw tantrums and didn't want to do it any more. It made me tear my hair out, but at the same time it gave me purpose, allowed me to exercise my mind and ease my frustration as my body slowly broke down but my mind remained strong. Things got worse, I was barely myself anymore, I was placed under end of life care and the end was getting nearer. Every time I registered for the next part of my degree I had the awful realisation that I might not be around to finish the course, and if I did would I be here to graduate one day? It was unlikely. But the OU was a piece of normality when my whole world had been turned upside down, a little bit of what others my age were doing, a ray of hope that pulled me on when times were dark. You cannot imagine how hard it was some days to read or write essays when I was so poorly. I was expected to last a few months towards the end of one course. Then a few days before my exam I received that magical, life changing call. During my recovery the OU provided the same refuge as it did while I was waiting. Its definitely not been an easy ride; but its been worth it.

Against all the odds I finished the degree, and amazingly with first class honours. I am delighted. It had been my dream from day one to wear that cap and gown, and to walk, unaided across that stage to collect my degree. And I did.

I had my graduation ceremony on the 20th September at the Barbican Centre in London, it was a wonderful day. My parents, sister and nan came to watch me graduate. After getting dressed, having photos, chatting to other students, and having some lunch it was time for the ceremony to start.

As I filed into the auditorium I was struck that the last time I'd been there was in my wheelchair and on oxygen. This time I walked without help of any kind, breathing with new lungs. We were seated and watched a short film of students talking about their experiences, for the first time that day I began to feel tears in my eyes. They spoke to the graduates about how there were times on there journey when they would have experienced challenges and wanted to give up but how determination had brought us to this graduation day. To be there was a complete dream, I beamed as I walked across the stage, heart beating out of my chest and received my degree. Later a young girl of around my age who had mobility issues was helped across the stage leaning on her mum for support, as she exited she took a seat in her wheelchair and the relief on her face at finally sitting down was so familiar. Again I started to cry at how lucky I am to be where I am, and continued to do so through the rest of the ceremony. That could so easily have been me and just as easily I could never have had my name read out at all. I am incredibly blessed to have had this dream come true. I said a little thank you to my donor and their incredible generosity to have allowed me this chance, I hope they were proud of what I achieved.

Thank you to everyone who sent me tweets, messages, cards and gifts of congratulations it has been incredible and overwhelming. You're all so generous.
Please consider giving someone else the same chances I have had and let some of their dreams become reality by signing up to the donor register using the links on the right.

Huge congratulations to my fellow graduates, we did it!!!!

Saturday, 17 August 2013

Wigs, Results and cake! Oh my!

Its been another long time but I'm looking on the positive side that it just means I have lots of things to tell you about :)

A while back now I made a dream come true. I had a weeks work experience at a West end theatre, not just a West end theatre but at The Queen's which currently houses Les Miserables, and next to Phantom is my second favourite musical. I truly believe it was pure fate that gave me this opportunity, as it literally came to me out of the blue. I was terrified I would mess something up but I can honestly say it was one of the best experiences I have had. One of the managers told me before I started "it will either scare you off for life or convince you there's nothing else you want to do". I can honestly say I don't want to do anything else. I worked in box office, front of house, wigs, lighting, stage crew, and management and adored every minute. I literally cried on my last day. I was slightly worried there might be a lot of bitchiness or that I would be some what in the way, but I can honestly say everyone I met was so friendly, chatty, and went out of their way to make my week extra special. I met some truly wonderful people and felt truly blessed to be given this chance; to be alive and working on a show that helped me through some of the toughest times in my life. There were a lot of 'thank you donor' moments that week. I'm slightly sad that this isn't my life, doing what I love in a truly wonderful atmosphere but its spurred me on to ensure that one day it might be.
Me trying on wigs!

In other news I have finished my last two uni courses a couple of months ago. I must admit with the intense fatigue I'm still battling with it was a tough old slog! I had an exam and extremely poor memory (more of that later) I was panicking a lot. However my invigilator was lovely and encouraged me to take rests as needed which I did rather than pushing through which made all the difference. I was waiting on edge for the results knowing roughly when they would be available.
They came early as we suspected they would and I had a hospital appointment on the day I thought they would be released. I had checked several times before we left with no joy. It was only when sitting in the basement of the hospital that I saw others had received their results, cue me frantically trying to get enough signal to check my result!Which is the main reason why when it said 'distinction' I thought I must have got the wrong page! But no I was correct. There was such a slim chance of me making the mark but I did and that means that I gained a First class honours degree in Literature! I'm going to repeat that. A FIRST CLASS HONOURS DEGREE!!!! I could have cried I was so happy. After years of the toughest journey imaginable while doing a degree I had made it with the best result possible. I was at the end of a journey I never thought I'd get the chance to finish. There were so many times in those 6 years when I thought I would die and never graduate, it used to break my heart but also pulled me on. I am the luckiest girl to be able to finish and fulfil my dream of walking unaided to receive my award. It will be another beautiful, wonderful day spent with my family that I wouldn't have seen without my incredible donor. I have been enjoying hiring the robes, buying my mortar board and booking my ceremony in London next month.

Following on from my last post I have still been having highs and lows. I've been lucky to be able to spend some time doing nice things both with friends and by myself. I've met lots of new people and am hoping to build some lovely new relationships after being restricted for so long. I've booked my first ever few days away by myself, me and a fellow transplantee Pippa are going to Disneyland Paris to celelbrate my 2nd transplant anniversary in October which will be very scary for me but exciting too. Its lovely to have finally started to live again. I'm still struggling a lot with fatigue, but am learning how to manage it slightly better. I'm working to build my muscles which my physio tells me will still be weak from my long wait. By building them up less energy is used to make them work so I have more energy to play with. I've also been getting help to maximise the energy I do have. I'm very lucky to have a wonderfully supportive family who help me where they can. Something as simple as having a lift to the station and back so I can save my energy for the actual journey, mum cooking me dinners or helping me with cleaning etc so I'm not expending energy unnecessarily all really helps.

 I think many people see transplant as the 'fix all; option, but its really just a separate set of issues. Obviously I am incredibly grateful and majorly better off than I was but to imagine I'm now normal isn't true. I still tire easily, shake from the drugs, I often ache all over or have pain and still have gunk in my lungs every now and then to name a few. My memory has also been very badly effected by both the drugs and my ongoing virus, its actually getting quite bad now so will seek advice at my next clinic. I still worry constantly that if I get an infection or rejection things could go downhill very quickly.

With all these issues many of the transplant community struggle to cope with the new life they've been given. I have been struggling for some time now but not wanted to admit it. It's a wonderful chance to be given but with any big change comes a lot of emotions and this is about the biggest range of extremes you can go through; being ok, declining health, coming to terms with dying, having a chance at life, waiting for years, hitting rock bottom, knowing you will die, being saved, going through hell to recover then having a whole new way of life that you need to slot into while still having to deal with medical problems and that ever present threat of it all crumbling away. I'll write a separate blog about this side of things soon but anxiety is featuring pretty heavily in my life at the moment although I live for the moments when it lifts slightly and I can enjoy things however simple they appear to others. When you've had the most basic things taken away you truly realise it's the little things you miss most.

After uni finished I've had a bit of a panic about 'where the hell do I go from here?' the answer is I'm not sure. I've done well academically and am tempted to study further with literature, but is it where my passion lies? No. My true passion is theatre and I want to do an MA at drama school. It wont be easy and my main concern is the physicality of the one year course and its long hours. So at the moment it's a case of working on stamina, and gaining experience. In the meantime I'm starting some short drama courses soon, continuing my singing lessons which I love and seeking more work experience. I also have a campaign plan for organ donation in mind which I hope I can get off the ground soon. I have a need to give back after being so lucky to receive such a massive gift denied to many. I will definitely need help with this and will give you more details soon but safe to say I'm a little lost with where to start at the moment!

To keep me busy day to day I am starting a new business. I am loving cooking and food which is a huge turnaround since before transplant! My lovely mum has always made us a birthday cake each year and she's inspired me to follow in her footsteps by baking and cake decorating :) I really enjoy the work and especially the creativity involved. Please check out my new cake page on Facebook https://www.facebook.com/Scrumdiddlyumptiouscakesandtreats. Come over, browse the cakes and goodies and give us a like or comment please!

think that's enough news for now but will be back soon I promise, hopefully with some graduation pictures! Thanks for sticking by me on this crazy journey!

PS!!!!! An Edit! I've been very lucky to have fulfilled most of my original 'post transplant wish list. So I'm looking for new ideas. Please feel free to chip in with ideas however odd, crazy weird or inspiring. Places to go (London particularly as I'm obsessed with it) things to do etc Go to it people!!!

Tuesday, 5 March 2013

Tremendous highs and horrible lows.

I cannot believe it has been months since I posted, I'm so sorry for the delay. There's been lots going on in life some great things and others not so good. Its also been very busy so will try and cram all the news into one long post! I've been struggling to get things down and with some problems (as you will read so please forgive me skimming bits and being a rather long post).

So I'm going to try and go in some kind of date order. A few months ago now I lost a very dear transplant friend. They had had their transplant but unfortunately out of such joy came an incredibly cruel twist of fate which caused their death. There are no words to describe how strong, graceful, modest, caring, dignified and beautiful they were. I won't identify them as they were very private, safe to say I was devastated by the loss. It was my first funeral and I sobbed all the way through. Im glad they had some happy months in which some of their dreams came true. I will never forget their courage and am honoured to have been part of their life. Love you my beautiful friend.

In happier news, we have a new addition to the family. As many of you will remember my dog Scruffy died last year while I was at my worst healthwise and I was completely devastated. I could never imagine another dog in our lives. But as time went on although the loss was hard, I felt like we needed that happiness a dog can bring. We weren't sure what to do but then fate lent a hand. A friends dog had puppies, but they were all sold.  The last pups sale fell through and my friends were going away so I offered to look after him for the week; and as soon as my little jackawa (chihuahua, jack russell cross) stepped over our door I was lost!
After a lot of soul searching we kept him and named him Lucky. He will never replace Scruff no one ever will but with every day I love him more and he develops new qualities that make us laugh.

My uni work is progressing well although its been really tough lately. Ive finished another module. And plan to graduate this year ( Also started two other courses (you see why I haven't blogged?). Hard work but hopefully worth it!

Next good news which is really my main news is that I COMPLETED THE HALF MARATHON!!!!! yeah baby! As I said in my last post I was really tired and undergoing tests (more of that later) so never actually got further than 5 miles. I was really worried I wouldn't get round as I knew how disappointed I would be. I worried I had set myself up for a fall. However, in the days leading up to the walk I got strangely calm, a bit like when I was in hospital after transplant. A strong sense of it being ok and even stronger determination. Everyone was saying how it didn't matter how far i got but i quietly thought I would do it. On the day dressed as supergirl, I headed to the race. I had carb loaded the night before and felt really upbeat and excited. And off I went! I walked the whole way but after the first mile I thought I can't do this, I persevered and it got easier. I kept going and was lovely to have people cheering me on, made such a difference. I was the slowest but I was till going and that was all I wanted. I got to mile 11 and hit the way I cried, and wanted to sit down this was the only point on the course that i really struggled. I was in such a state but determined to finish! I had to go behind a tree to take of my tights and supergirl pants (over tights I didn't go commando) as my feet were rubbing on them. My mother took great delight in announcing this and twirling said knicker around at the end! My sister, her fiance, my nephew (who made an amazing banner) my aunt, uncle nan and godfather and of course my mum and dad came to cheer me on and kept me going. A friends daughter was also running so she appeared a long the way too! As I saw the 12 mile mark two friends Pops and Paul were screaming encouragement! They put their arms around me and talked me all the way through the last and hardest mile. I was last to finish (although others had cheated or left) and as I walked down the last stretch the organisers were clapping, a lovely guy had ridden a bike ahead and got them to cheer. My friends and family all crossed the line with me shouting encouragement and we all got a bit teary. I was so exahusted by then but so incredibly happy (I'm crying writing this!) it was a dream that I believed to be fantasy that I accomplished by myself. I was proud, emotional and a mess! I thanked my donor for this incredible gift they had given and to those who weren't able to stand beside me. It is one of my biggest achievements esppecially considering I was dying last year, I completed 13.1 miles in 4hours 30 mins. My donation page will close soon and thanks to your generosity I have raised nearly £5000. Amazing. On the way home I said never again but by the evening I was stating that next time I would run it. As I crossed the line I was asked to film a piece for ITV london which you can see below.


I'll skim over a few months. As I think I mentioned I have beeb suffering a lot with fatigue and other health problems. Basically I have contracted a virus called Epstein Barr which has been up and down over the last 6 months. To start with I tested positive for it and was told to be on the safe side I would need a CT scan to check for any lymphoma's as they are related to this virus. They found that a gland in my chest called the thymus was enlarged and therefore required a biopsy. The biopsy was done with a cut but when they got in they found my scar tissue was so thick they could not reach where they needed to. So I underwent an op that was supposed to take 30mins and instead lasted nearly 2 hours for no results. Then I had to have biopsy number 2 which was done while awake with a long need being passed throught the chest, a horrible experience. The problem is that gland being biopsied is on top of two main arteries and heart so literally a moving target. Its possible they can miss and cause a major bleed, which would mean reopening chest. I endured this but once again a positive sample could not be gained so I needed a 3rd needle biopsy.
 I went in for my 3rd biopsy which unfortunately collapsed my lung and was much  more painful, it was testament to my incredible dr that he kept me smiling throughout. I also had a lovely nurse who held my hand throughout which made a huge difference, both said it was testament to me that I was able to follow breathing instructions and remain calm as this was such a risky procedure with risks of internal bleeds. I had to have a drain put in (both drain and biopsy done without sedation) and stay for a few days but thankfully the biopsy was successful and results were Clear of cancer. Dont know why the gland is enlarged and will need to be monitored but its not cancer. During the C scan they saw an area of shadow on other lung so I was given oral antibiotics to clear it up and went home. After 8 days on antis I woke with a bad pain on that side and the feeling of needing to shift stuff but unable to do so. It was like something was blocking my airway my lung function dropped 30%.. I phoned Harefield who had no beds and sent me to A&E. It was the worst 7 hours waiting in a room full of vomiting virus, and other awful coughs and colds I was worried sick. The drs had no idea how to treat a transplant patient so the next day I headed to Harefield without an appointment. An xray showed the shadow had spread over whole lung and pleurisy was supected but rejected. I needed a bronch the next day and another CT scan which showed my other lung had collapsed. When they went down with the camera they said the lung was blocked with such thick sputum they took 45 mins work to hoover it out. They said I would never have shifted it myself and would have detriorated quickly if I hadn't come in. I was put on ivs and monitored closely. Everyone was so kind and looked after me so well. I had a long line in which I struggled with but actually was easier than I thought. I was let home a week before xmas on home ivs. It was extremely hard fo me not  to have the lovely chrismassy build up I was hoping for after 6 years of putting Xmas dreams on hold.

Since then my lung function has improved but unfortunately the fatigue has persisted to the point where it has been unbearable the last two weeks. My level of EBV virus was dropping but has suddenly shot back up. I have had loads of tests to rule other things out so while not 100% conclusive we seem to think the EBV is the problem. It's been unbelievably hard mentally to return to a life pre transplant literally being too ill to get out of bed and feeling so dizzy, weak, and absolutely exhausted. Every time I hoped I was starting to improve but come back down with a crash. Every time I do anything slightly strenuous a couple of days after my body just crashes out and I'm SO exhausted, shakey, muzzy headed, dizzy and ache all over. not an awful lot to treat it. The most devastating thing is that there is not a lot of treatment for it and I am unlikely to ever get rid of it fully or feel 100% better. Only treatment is reducing my immunosuppression which is risky as it can lead to rejection so is a delicate buisness.This means that I have all the symptoms of a virus such as exhaustion, weakness, difficulty concentrating, aches, etc but whereas a normal person can fight it off I can't because my immune system is suppressed after transplant. I can't get out much, am again wary of being out on  my own while feeling so awful and this is severely effecting my concentration and memory which is having a detrimental effect on my uni work. don't mean to be nasty but being told it will "wear off" or to "be positive" really isn't helpful. I consider myself a positive person but most people have enough of feeling ill with a virus after a few days, imagine how it feels having it all the time. Not so easy to brush off. It's unlikely I will ever get rid of it completely and its very hard to cope with feeling so rotten especially when youve gone through so much to feel better. The statistics after transplant are that 50% of people die before 5 years, hence why I'm keen to enjoy my life while I can and hate being forced to rest in bed or be housebound, possibly even using my wheelchair occassionally.
At the moment we are reducing my immuno's a bit and keeping a careful eye on my Lung function etc to check for signs of rejection. I have a lot of dreams and ambitions and at the moment they are all fading away while I lie in bed wondering if I did the right thing having my transplant if this is life after. I will always be grateful for my second chance and the things ive seen and done but just wish that things could work out differently. Anyway I am not giving up completely just struggling a lot
to cope with the last few months, Rest assured I  intend to do all I can to get the best treatment possible and continue the good fight.
Thats my update and even if I just write a short paragraph I will try to keep up with my blog more regularly. I missed it and hope you missed me a bit too.

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