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.
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.
