Friday, June 29, 2007

Thanks for the feedback and thoughts on my last post. Always interesting to read other people’s experiences and beliefs on the matter.

Last night I did another talk, I am doing quite a few now and trying to approach different groups in order to raise more awareness. This one was at a Bupa hospital, and was kindly set up by a friend of mine, who I met many years ago in hospital not through CF but through similarly dodgy lungs all the same.

The talk went really well. They were a lovely group, I was slightly more nervous than usual as these were health professionals so of course my marvellous “and then it went a bit deflatey and sat at the bottom of my chest cavity stubbornly” explanations wouldn’t really do. They had covered all the tables in pink paper (woo!) in my honour too. I did my usual blurb which is to run through my life really, throwing in facts about CF and about organ donation along the way. I love public speaking I really do, but I still haven’t quite become used to making people cry. It makes me feel sad watching them but I know that it means I am getting the severity of the situation across and also that luckily for me my “story so far” has a happy ending. A group of them are running the 10k soon to raise money for Foulis ward, which I spent many many months on as many pwcf do so click here to sponsor them.

I finally heard back from Harefield. I had a CT scan last week to investigate my Wheezy Penguin Syndrome. Essentially what they thought they would see (sciencey goggles on please) is evidence that at the join of the new lungs onto my windpipe, the scar tissue had got completely over excited and over accumulated causing a partial blockage of my airway which would make a wheezey sound like I currently have. Weirdly the CT scan showed no such behaviour, so now I am booked in for a bronchoscopy and possible biopsy to examine things further. I told my mother who put on a pouty face somewhat similar to mine and decided flatly that I could not be spared for a night or so. Good to see where I get my mature streak from then.

Am not too worried, apart from obviously the dreaded ‘R’ word which does crop up when pondering over what it could be. Still I have had a general anaesthetic more times than I have had hot dinners, and it will be kind of nice to be a patient at Harefield and actually be able to walk over to the canteen! Plus A is going to drive me up there on Monday night and we are going to go to a gorgeous little restaurant in the town that I have never been to. So anyway it won’t be a big deal, will let everyone know how it goes once I am back. At least I am only missing rain rain and more rain…


Anonymous said...

Glad your talk went well, and hope that wheezy penguin syndrome is got to the bottom of quickly.

Have you thought about including pub and restaurant reviews in your blog? I'm sure they'd be more entertaining and informative than the Good Food Guide :P

Fi said...

Best of luck Em, hope the Wheezy Penguin gets the push sooner rather than later.

Lorraine said...

Have you thought about going in to school's where children who have CF are? You'd be a good role model for the younger generation.
Winter wedding?! I thought you were just having a long engagement! Congratulations to you - exciting time and good fun - make it a day to remember - pink all round - poor A! xx

Anonymous said...

good luck on monday em x

Anonymous said...

Oh, no! I have just read the full "Wheezy Penguin" Wikipedia entry and now have the frightening idea that Harefield are going to fit you with a new squeaker...

Anonymous said...

You could always audition for a part in the next Wallace and Gromit movie ....... Wallace and Gromit and the case of the Wheezy Penguin?? Sounds good!

Seriously though, hope you get it sorted soon.


Anonymous said...

Good luck, im sure ull b fine. Glad your talks are going well.
Get rid of ur wheezy penguin cough
come back as a normal penguin
Love, hugs
and best wishes

Jennie Higgins

suzie said...

Make sure you have at least three courses Em, there's nowt like having to be prised out of one's chair after a good feed.

I'm sure they'll get you sorted at Harefield chuck.

Love 'n' hugs
Sue x

Sarah Milne said...

Good luck on Monday Em, we'll be thinking of you. xxx

Anonymous said...

Yes Good Luck on monday you will be in my thoughts and we will all be anxiously waiting to hear that all is well again real soon. Love to all, Diane T x

Anonymous said...

As one of your 'wet-eyed' audience last Thursday night....I would just like to say 'wow! are an inspiration to us all and a huge thankyou for a fantastic emotive evening.' All crossed for tomorrow xx

Anonymous said...

Hi Emily, just realised that it must be today you have your little am ensuring I keep you well and truly in my good thoughts all day long. You'll be fine, don't worry. Just a small hiccup on the road to full recovery. Excellent to hear you are putting your speaking talents to good use, bless you.
Keep us posted and take good care.

Anonymous said...

'morning Emily, rootin' for you.