Thursday, September 07, 2006

It wasn’t that I couldn’t think of anything sensible to add last night (honest), it’s just there was no news as such so decided to wait until this mornings X-ray etc before updating.

Last night I found out a friend, Mary, who was waiting for transplant like me wasn’t doing so well. We have been emailing back and forth a lot, sharing the highs and lows, the fears and hopes, and generally supporting each other along this rather rocky road that is the wait for a transplant. As always the fantastic CF community rallied round and messages of support began flooding in, so I was relaying them to her boyfriend Alan via text then via email. Feeling entirely helpless and knowing she likes to read my blogs, I sent some similarly waffley emails, as I had that awful itchy feeling of must do something, anything to help, and these were read to her and she would squeeze Alan’s hand to show she could hear and apparently even managed a smile.

Mary and I had this thing in our emails, where we decided we were going along this rocky road hand in hand, as our stats were pretty similar, and so whichever one was struggling at the time, the other would gently remind them that they were holding their hand, pulling them along. Sounds strange, but it was comforting. This morning, aged 23, having fought and fought till the end, Mary ran out of time. There are no words when this happens, because there is no rhyme, reason or fairness. All my thoughts are with Alan and with Mary’s family, it is just very very sad.

This has put my news into context; I would have probably been stomping on here today as after going down for my 55930th X-ray (actual number may vary from melodramatic guestimate given) I have just been informed by the team that I am definitely not looking at home before next week; lung is still decidedly deflatey and not even attempting to sit up and take notice at present, and until it starts moving in the right direction, it is not safe for me to stray too far from the hospital. Having reflected on this a little, and taking into consideration today’s events, I consider myself in quite a fortunate position. My lungs are obviously incredibly precariously balanced right now, however I am feeling well, I am not in any immediate danger, but due to unstable and generally naughty lung behaviour I remain urgently listed for transplant.

I am planning a shopping spree (will carefully ignore all envelopes that look like bank statements when my post is brought up) and a picnic with my family in the nearby park, perhaps a Sunday lunch out too, so a good weekend lined up. I still have that chance ahead of me, and as Alan reminded me what I need to do now is concentrate on fighting hard myself. And I will.

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Lots of love Mary the fairy xxx


Tasha.x said...

So sad news about mary may she rest in peace and breath free from pain now. Hope u get home soon beautiful take care x x

Anonymous said...

Emily this is Angel/Michelle from the Kidney Patient guide and I just wanted to reach out some hands and give you a hug today. I am sitting here with tears forming for this young woman who had everything to live for and the unfairness of this world.
This absolutely shouldn't be happening anymore and I always hope and pray we won't hear of the sad stuff again. Somehow it just keeps happening and it never gets any easier does it. I have known many go but nothing quite prepares you for the younger ones and my thoughts are with you today.
Much love and pink thoughts coming your way that your chance will come soon and alot of thoughts and condolences with Mary's family at this time.
Take care of yourself and many people are with you through good and bad.

Anonymous said...

Emily sooo sorry to hear about the loss of a much luved friend. Our thoughts and condolances to all Marys family friends too.

Im sure must be an emotional time for you all.........

prayers, hugz and thoughts to you.........

Elaine & Rach & family xxx

Nicola said...

Sweetie I don't really think there is anything else I can say at a time like this.Mary was such a lovely person,who I wish I had known so much better.I am always here if you ever need a cyber hug xxx

Simba said...

So sorry to hear about your friend Mary. I'm sure your messages made a big difference to how she and Alan were feeling last night.

Also, sorry to hear that you're staying put for the time being.

Lots of love Ms Simba xx

Anonymous said...


So sorry to hear about your friend Mary. It was so nice that you were there for each other, Im sure that gave her great comfort.

Im sorry that you have to stay in hospital a little longer. Enjoy your weekend with your family. Stay strong sweetie. Speak soon.

Love Lisa xx

livvy said...

Another beautiful Angel - breath easy now Mary. xx
Emily - I'm sending you a charm I sent Chris a few months ago - he kept it with him until he received his call. You need a charm. xx

Pauline said...

So sorry to hear of yet another young life gone. I would like to say sorry to Mary's family and friends.

Livvy, I think a charm would be a good idea, my Mum's friend gave me one and I kept it with me until I had my op.

Emily, stay strong, lots of love

Pauline :)

Anonymous said...

I'm so sorry to hear about Mary - it's such a sad loss. I don't know what else to say, but I hope you are ok. Lots of love and hope xxx

Anonymous said...

Rest in peace Mary.

Sending you hugs Emily.
Those lungs are out there somewhere preparing themselves for a new, pink, sparkly top. Keep hold of Livvy's charm and may it work for you very soon.
Hope you're home before you know it.

Anonymous said...

Emily - I'm so thoughts are with you and of course Mary's family and is so cruel :( *hugs* Keeping everything crossed you're home really soon Carolynxx

Sarah Milne said...

Emily, you must feel a bit like we did a couple of weeks ago when little Alex died. Such a huge mix of emotions when you loose someone you were walking hand in hand with and helping each other out when that path gets a bit more rocky for one than the other. Mary was really lucky to have you there with her on that road and I'm sure she was comforted no end to know you were still there, holding her hand through those texts and e-mails, when she reached such a sad destination. I send my love and best wishes to her family. As for you, I am sending you huge hugs. You must be devestated for Mary and it must be so dissapointing that you can not yet go home. I pray everyday that you get that call. Retail therapy sounds like a most excellent idea. Enjoy your weekend in the sun and love to Adam and the family.
loads of love as ever
Sarah xxx

Anonymous said...


really sorry to hear bout Mary, my thoughts are with you, Alan and her family. Hope ur lung starts behaving soon so you can get home, CHIN UP & BRIGHT PINK SMILEY THOUGHTS!!! :)

Big hugss xxx

Anonymous said...

Oh Emily, having to wait till next week to go home.. at least it sounds like you will have a good day on Sunday.. Thinking of you hun you must feel the loss.. Chin up and lots of pinky smiles coming your way..

xx Sandy xx

Anonymous said...

We're all so sorry to hear the news about Mary. Keep fighting and remember that there are many, many people holding your hand on the rocky path. Our thoughts are with you as always.
Think pink and keep smiling

Anonymous said...

I'm fighting the urge to throw a spectacular tantrum complete with "IT'S NOT FAIR!" histrionics at the cruelty of it all.

But instead, I'll give my little girls an extra cuddle today and send one to you too. Stay strong. Xx

Anonymous said...

Hi Emily,
This kind of thing really makes me mad as its a tragedy that could have been so easily preventable. Its a reminder that a lot more needs to be done regarding organ donation and despite everyone getting excited about this new legislation it demonstratably doesnt go far enough.

My thoughts are with Marys family, and with you for losing a friend. Stay strong Emily, and don't ever give up.
Jen x

Unknown said...

Hi Emily

I am really sorry to hear about your friend such a shame another person has been taken least she had a good friend in you emily.

I hope you get your new pink and sparkly lungs soon.

Best wishes

Anonymous said...

There's a distinct lump in my throat as I type this message; you and Mary's family are in my thoughts today my darling Em. I'll bet she's still holding your hand along that road; your very own personal Angel. My love to you,

klics04 said...

Our thoughts are with you and Mary's family she will always be by your side. Love to all from Ingas mum and dad in Cyprusxxx

Anonymous said...

What a beautiful girl, how terribly sad

much love Em xx

MoO xx

Jac said...

My love and thoughts are with Mary's family. Much love to you Em..thinking of you xxx

Anonymous said...


The loss of mary is so sad :( You are just so incredible Emily. Reading your blog moves me to tears. I hope you get the call you so need soon.

I received my kidney transplant nearly seven months ago and not a day goes past where I dont think about you and everyone who is waiting for that call for life.

I emailed everyone in my address book about Mary, you and little lucy to push those that haven't yet signed up to do so.

My thoughts are with mary's loved ones and all of you fighting each day until you receive the gift of life, always

Mike from kpg

Anonymous said...


I'm so sorry, it's so hard to lose a friend. x

May Mary rest peacefully. x