Legacy Ball.

Its been a while, but i felt the need to write. I’ve started this blog titled Legacy Ball but we will see where it ends up. As many of you know last weekend was the #LegacyBall in honour of my wonderful friend Emily Clark a girl who I miss every single day.

Most people look forward to fancy dresses and getting all dolled up and getting to wear pretty shoes. Me not so much, I don’t know what it is but I don’t like to fuss, I dislike shopping rarely wear makeup and shoes well lets just say your much more likely to see me walking around without them than with (I’m currently sat in Sunflower & I a coffee shop come florist in cardiff bay shoeless). However it was #foremily so I couldn’t not go. It was an amazing night and I was so grateful to see many of my cancer friends who had brought their own tables of people along with them. The food was incredible and Em would have loved every second! It was a fantastic evening and I was super grateful that some of my family came along to.

But its so much more than that- Currently our Bone Marrow Transplant ward in Cardiff is well- dated and we don’t even have en-suits now you may think why do they need en-suits?? Well a bone marrow transplant is basically a new blood system and immune system so while it grows your super prone to infections so your not aloud to leave your room. Some are in for 2 weeks others for 3months+ (depending on how fast you graft and how many complications you get). I’d like to ask you how long have you been without privacy? How long have you gone only using baby wipes and a bowl to wash? How would you cope using a commode every day for 3 months? We need a new unit so more people can get a second chance at life like I have. The #WilsonWard need £1 million… so far the incredible remission possible team and supporters have raised £52,000 but there is still a way to go. Can you help? Do you want to be involved in something amazing? Did you go but left with money in your purse why not make a donation? Why not sign up for the next event?

Im now sat in a cafe in tears because I’ve just heard the song Piano Man- I’m instantly transported back to Michigan to summer camp- to the life I had. Many people (sometimes my family and friends included) don’t understand what a huge impact a bone marrow transplant is… Im reminded of the conversation I had with some of my amazing cancer friends on saturday night as we sat and watched people dancing feeling comfort in the fact we all understood how each other felt. I remember the way my consultant by just being on the stage on Saturday night made me cry- because without him I wouldn’t be here, he pushes and never gives up. Hearing how he had to break the news to my friend that they were out of options was heartbreaking but inspiring at the same time because I know how hard he fights for every single one of his patients. (He’s the guy in the pictures below [the others are some of my cancer friends])

I’ve spent pretty much the whole of this week recovering from one night. Sometimes one night out has no impact on me other times it could have a huge impact. I never know. I can’t plan, I can’t think ahead to a year from now or even 2 months from now and this is all thanks to my transplant. Not that i’m not grateful because believe me I am! Life is very different for us and it may always be that way it may not, but for now I will forever be reminded of it because despite my progress this big thing happened and it effects me every day. However, we don’t need limiting because of it in fact we need the push we need to go to things like the LegacyBall to be reminded of how far we have come. We need the challenge because without it we will be stuck. We will not be more like Emily who is was always pushing forward. So while you may think sometimes I’ve moved on (i haven’t), or I’m still stuck in cancer world (because I’ve no choice) or that I’m still really ill (no this is me now) remember I’m different now because of it and thats ok- because boy am I a better person thanks to it. Please remember how far we have come and that we like you don’t want to be limited to anything. So its for this reason I’m begging you to dig deep and donate to the #wilsonward help give others that chance to be a better human! Give them a second chance at life let them thrive!

When I was at the ball I was reminded how much I’ve changed and achieved yet I only saw this when I was with those who ‘Got it’. I see how different I am from my family and others my age, so it was such a mix of emotions being there. I’ve missed Emily and thought about her every day which is something I sadly didn’t do when she was alive. I looked forward to our catch ups but I’d say she has impacted my life even more since her death than when she was alive. Emily was the sort of person that just hearing about her would make you want to meet her. She was the crazy patient who kept up with her studies whilst going through the craziest time of her life. She would chat to you about everything and anything and you’d leave feeling happy, alive and inspired. She would laugh with you, laugh at you when you cried whilst remaining compassionate. She never complained or moaned even when she had reason to. She had such a strong faith and was so driven and determined I’ve not met anyone like her. But for me Emily was life changing! (So life changing it needs a whole other post for it). Emily’s plans were bigger than just her- she wanted to help others she wanted to inspire people to do something. I would absolutely love to do more and believe me Ive tried! But as I’ve explained above my complications complicate things so I can’t plan a big event or run a half marathon. What I can do tho is inspire and encourage you to do something. So why not ask me more about this amazing Emily, what the Haematology ward is really like and let me inspire you to do something.

Emily wanted more to have a second chance at life so for now i’ll leave you with the link to Emily’s/WilsonWard just giving page… Go on empty your purse there…https://www.justgiving.com/fundraising/remissionpossible

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5 thoughts on “Legacy Ball.

  1. Curlyman66 says:

    Hi I too was at the legacy Ball, what an amazing event it was. I’ve been very moved reading your blog. It takes real guts to write about these life changing events. I never met Emily although we exchanged emails and tweets. I came across her blog when I was desperately researching on behalf of my son. Adam had the same disease as Emily, was almost the same age, was diagnosed a bout the same time and went through all the same treatments. He too had a stem cell transplant, thankfully in a room with ensuite facilities. I cannot imagine how it must have been like without. Sadly Adam died , just one day before Emily did. People like you Emily and Adam should not have to go through what you have had to. It is the responsibility of those of us who have been lucky to do our best to alleviate the situation for others. I wish you well in your health and you are right the cancer will have changed you, Adams cancer changed me and him and all who had close ties to him. I miss him dearly but the legacy of him and Emily and many others is huge

    Like

    • ceinwenstone says:

      Thanks, I followed Ally’s amazing journey with all those tube stations just amazing! You guys are incredible I’m not sure how you do it! Thankyou for your lovely comment it means a lot. Im fairly new to this whole blog writing thing but I’ve got a huge list of the millions of things i want to talk about in my blogs- I’ve just got to get on and write them. Emily has been a huge inspiration for me and has really shaped and changed my life in a way i’d never have imagined. Im certain that her and Adam are hanging out together now- I am so sorry I didn’t get to come and say hello to you at the ball, I knew you were there somewhere and I wanted to thank you for coming so far. Maybe we will meet at a future event. Best of luck with what ever Ally has planned next- and I’ve got my fingers and toes crossed for the Just Giving award. x

      Liked by 1 person

      • Curlyman66 says:

        It would have been good to chat! We were sitting at the table behind Donna and Andrew ‘Ge’ . I had s chat to your Dr Wilson, he knew Adams consultants as they share care for North Welsh patients who go to Liverpool for SCTs. He was really nice. I’ m sure Em and Adam would have got on well . If there another Ball we will be there .

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