GUCHs a genuinely international community

Well, many of you who've read this blog know I'm tapped into a wider network of GUCHs across the world...

That network has given me some of my closest friends, those people who can predict how I think and what will upset me, and what I might do to cheer myself up. They're the people who in the small hours of the darkest nights know when I'm screaming at the night sky, I don't know how and the rationale part of my brain says its because they share the same friends and know when something isn't good with them... Bit that's the rationale part of my brain.
We also work together, with the parents and families groups, in groups of many acronyms - ECHG, ECHDO and Corience. We're connected in ways that when I started being involved in GUCH stuff 15 years ago would've been considered science fiction...

We email and facebook, tweet and text - we now can keep tabs on each other between meetings and between letters. It also means we can use each other as a source of expertise, finding out what we do in our countries and how we help each other.

Which is why I'm in the Swedish magazine "Hjartebarnet" writing about volunteering for GUCH PA and including last years Awareness Walks in Chester.

So, GUCH PA is in a Swedish magazine... with links to the GUCH messageboard (http://www.guch.org.uk/forum/index.php), Walking Club (http://www.guchwalkingclub.org.uk/) and this blog... so to my Swedish readers god natt och tack för läsning

TTFN

Paul

Comments

Post a Comment

Popular posts from this blog

Something a little bit political...

Well the legs still don't want to run, walk and climb is fine, run makes them feel a bit leary ... Probably the two most contentious words in the congenital heart world (UK branch) are "safe and sustainable", a quick trawl of the support websites or facebook will show many a group being set up to save a hospital or a ward. I won't be joining any of them. Not because I don't care, but because I care too much. The origins of Safe and Sustainable go back to the Bristol Hospital Enquiry, and quite simply this is designed to ensure that the surgery that heart kids get is the the most appropriate, done by well trained and supported surgeons who are used to doing the operations and are in a surgical setting which are designed around the needs of the child going through the surgery and their family. Is that too much to ask? I don't think so. I want every heart kid to get the best surgery available to them, I want their parents to be given the best advice, support...
Read more

12% of a plan…

  It’s been a month.     A month since the new heart valve was inserted… the chaffing has died down, I’ve been sensible and built my walking up, restarted my apple fitness plus bits and bobs (boy has it been a long time since I bent like that, or cycled/spun like that) and I’ve been for two runs – a gentle 3k which worked as a prelude to my return to my local parkrun… I finished, my tally went up 1, and I remembered just how tough it is to run the first mile on so soft, dry sand… In hindsight I would’ve been better to walk the first third and conserve my energy (and pool of fitness) to the prom and the grass thirds…   Relive 'Return to Parkrun!' Yes, it does look the first bit is out to sea…  Monday was a random day off work to get out and do something, so with a bit of head scratch and some nifty plotting on the OS Mapping app I wandered along the canal, and then down the Transpennine Trail & “loop line”… Almost pancake flat, I know...
Read more

It’s a kind of magic (the science kind)…

  Well, operation done – I have a funky new valve and a bit of a sore groin.     I was in hospital for 28, sleepless, hot, hours and unconscious for about 4 of them.     While the insertion points for the three catheters I had in me in at the same time heal it’s a case of taking it easy, let my body get over the various manipulations (sore throat, the impact of the still there frozen shoulder) and the simple lack of sleep from stress and some noisy neighbours on the day ward I was on.  There’s really not a lot else to say… I went in, did the usual pre-op checks, had a chat with the interventionist, had a chat with the anaesthetist, signed the all-important consent forms (kids – that’s when you know you’re an adult; parents, that’s when you know your kid is in charge), was wheeled across to a hybrid cath lab… laid down, bit of banter with the team and the next thing I knew I was waking up, sore and not actually knowing whether the funky valve had fitted me…...
Read more