Up The Farway Tree

Big Birthdays!

I was in Newcastle on 9th April but haven't had chance to update properly since then because it was both my 40th birthday and mums 70th birthday a few days apart!   40 is a milestone indeed - when I was born people with CF were not living beyond childhood, never mind reaching 40!!  I am forever grateful to my donor who has given me the chance to reach this milestone.   I feel like it was only 5 minutes ago I was 18 and leaving school!   It was lovely to catch up with friends and family for my birthday and I am overwhelmed by the love and support :-) 

I appreciate all my wonderful gifts.  One of the most special has to be the necklace my mum got me - it's three interlocking rings with Estelle, Andrew and Jacqueline on them.   It's even more special because unbeknown to each other, I also bought her the EXACT same necklace for her birthday - but with Jacqueline, Frances Ann and Claire.    How spooky is that???   It worries me greatly that we are on the same wave length......!!

With regards the clinic visit, I had another small 50ml drop, taking my lung function down to 38%.  I'm glad it wasn't a bigger drop but I am desperate for it to just stay at one level for a while and give me time to adjust.  I am definitely feeling the drop more and I think it's harder because I am not getting time to adapt.  I have decided to keep going with the trial drug at full dose, even though I'm still feeling quite sick and really tired.   The doctor felt by the summer I might have a better idea if its doing much.  It's near impossible to tell, as we don't know what it would be doing on its own.

I'm still not at work and this is getting me down quite a lot.  There are days (or parts of days) where I think I feel ok and could be at work...then I suddenly feel really sick, or need to lie down and end up napping for hours, then I wonder how on earth I would cope.  The consultant said he thought I was better staying off at the moment, as the most important thing is trying to get some stability.  This is part means avoiding infections etc - I had a chest virus recently which really hasn't helped.  It's near impossible to avoid though!  I am not making any big decisions about work and just giving it more time - I am unsure if the drug trial is causing a lot of my general ickiness but obviously don't want to give up on this too soon.  It's hard to work out a reasonable work plan when every time I visit newcastle I have lost more lung function.     I guess I just have to do what feels right at each stage and not think too far ahead.

I'm back down mid May - and hopefully with some nice spring weather and lots of easter chocolate, it will be a good visit :-)