Monday, April 30, 2007

I had the BEST weekend (mind you I seem to be starting the majority of my sentences with “I had the BEST…” recently).

A had clients to see/business to do up in Manchester, and for the first time, I was well enough to go with him. As we planned the weekend, scheduling in when he would be busy working and where I would go and what I would be doing, I began to get quite nervous; I haven’t been an independent adult before really, not since my first year at Uni anyway. In recent years I have always had people around me to help me and to accompany me, and have never really been anywhere I don’t know, as hypothetical problems would arise such as “what if I get into difficulty breathing or get tired? What if I run low on oxygen? How can I get back quickly if I am in unknown territory?” Due to these questions being fairly foreboding and unanswerable, I tended not to stray to far from familiar ground. Not to mention of course the mandatory “stay two hours from Harefield” rule which penned me in somewhat.

Anyway, I was most definitely scared of going, just a general fear of the unknown and of behaving in an adult fashion (something I am really not accustomed to doing). The drive of people I would see up there and things I would do however was enough to override this (along with A’s reassuring words of “don’t be silly you’ll be fine”) and we set off “oop North”. Our first stop was Liverpool. The first night we stayed at a beautiful Hotel, which overlooked the huge expanse of the local park, green as far as the eye could see and uninterrupted except for the odd early morning dog walker or jogger. The next day I joined my friend, an ex-flatmate of mine who knows me so well it’s annoying and who now studies in Liverpool. It was fantastic to get to actually see her life up there, what she is up to, meet her friends, go out to some of her local haunts…all things I never thought I would be able to do.

On the Saturday, I rejoined A, and we headed over (notice I use the word “over” instead of a geographical direction as I don’t have a clue where abouts I was in the country nor where I was headed) to Derbyshire, to visit my granddad, who is one of my heroes in life, and who incidentally is 91 and just got a mobile phone. It was an absolutely glorious day, the sun was shining and Derbyshire is just so picturesque. We sat basking in the warm sunlight and talking until late afternoon, when we set off back to Manchester for the final leg of our journey.

We stayed with A’s friend (I was last able to visit him over 4 years ago) and I was spoilt rotten and treated like a princess - two things which I am quite comfortable with. On the Sunday I was able to meet up with Mr Pimpdaddy of pimpthatsnack fame, and his lovely lady, both who have been incredibly supportive to me and the Live Life campaign (see people are just awesome, I know I say it all the time but it’s true). This meeting resulted in the taking of muchly photos near a tree which was adorned with paper flowers and butterflies (I liked the tree and insisted that all pictures be taken with it included.). they dropped me off on the main road, and I wandered back towards the flat. I hope no one was watching me because I may have looked like a madwoman; I was beaming from ear to ear and laughing to myself, just the sheer overwhelming pleasure of being alive and being able to have all these experiences. Life isn’t about the huge stuff you know, major aims, aspirations, ambitions…those are important of course but it’s all the little bits, the moments which are happening right here, right now, that make it what it is.

After a truly spectacular weekend, it’s back down to earth with a bit of a bump today as my lung function, which has been beautifully behaved so far developed a mischievous streak and dropped by over 10% today. Dutifully, I telephoned Harefield and have been asked to come up tomorrow to be checked out.


Anonymous said...

This was such a lovely post to read, I'm so glad you had such a good weekend "oop North"! :) And you're definitely right, life is about the small-but-very-important things that happen day to day, the things that make us smile and laugh and make life worth living, and we should all remember that!

Hmm, your lung function is indeed being mischievous...maybe you didn't pay it enough attention over your fab weekend and it's paying you back?! ;) Hopefully the lovely Harefield people will be able to explain it and sort it out for you :)

Yey for Lisa's transplant! Such fantastic news, I'm so happy for her! Fingers crossed for a speedy recovery, and thanks to the wonderful family who gave her this second chance.

Love always, Kat xxx

Anonymous said...

So glad you're able to get out there and enjoy your new found independence.

Hope your lung function jumps back up to where it was. x

Anonymous said...

So pleased to hear that Lisa has had her transplant.
Look after yourself don't get over tired, the world will still be there if you have a few days rest.LOL.

Anonymous said...

Dont no where to rite this so thought Id put it on yer blog. Just wundering how come this years Em's Angels target is 1000, and not 15,000 like last year?

Gud luck with it. And huge YAY! for Lisas transplant-I wundered had u heard! Its excellent! Lv, Ang

Anonymous said...

wow sounds like you had a great time away bet felt like freedom! :D Soo pleased for you both.....
Hoping 'just a blip' and maybe all excitement from weekend away with lung function slight drop % etc.
Good luck let us know how you get on. Least u also get to see your friend Lisa too hopefully....

best wishes & hugz Elaine & Rach xx

Jayne said...

Hope all goes well with your appointment. xx

Jac said...

I am just so amused at your granddad with his mobile phone!! Brilliant:)

Hope harefield appointment goes ok..

Love and higs
jac xx

Anonymous said...

we all have such a lot to learn from you Emily -we just don't appreciate these wonderful little everyday pleasures. So glad you had a fab weekend. Don't worry, your lung will start behaving again properly very soon.

Thrilled for Lisa - have her on my daily list of people to root for. Hope all is well with her too.

Take care.

Anonymous said...


I have been following your story - had a single lung TX at the Freeman 3 years ago 12 years after being diagnosed with LAM. I wanted to reassure you that I also had trouble with a damaged phrenic nerve and paralysed diaphragm, but it really hasn't made too much difference too me - I just don't have any turbo charge when I need it (i.e. to run up hills). I'm so glad everything is going so well now, and completely emphasise with all the feelings you're having. £ years on, I still appreciate every day!

Best wishes

Gill Hollis

Emmie said...

Hi Sweetie, been thinking about you all afternoon and hoping that you got on ok at Harefield. Sadly I appear to be lacking in the fortune-telling department as I don't know if you are actually fine, so hurry home and update me! ;o)

Just a thought, but since hiccups are an irritation of the phrenic nerve (thanks Dara....) then does this mean that you don't get hiccups anymore as your phrenic nerve is paralysed? I guess there's always a silver lining to every cloud hahahaha! xxxxxxx

Anonymous said...

Yay for Lisa getting her transplant (I just went 'yay' out loud then)!!! And yay for you stepping out without a chaperone - once you start you'll never know where you might end up. I personally recommend travelling alone as you don't have to bicker with anyone in the check in queue or defend your choice to pack really random items of luggage!

love Philippa

Anonymous said...

Your weekend sounded perfect - hardly surprised your lungs drooped slightly after all that excitement!
Great news about Lisa too!!

Keep it up Em, lots more of that adulty type stuff ahead for you.

Audrey xx