Learning to dance in the rain

Sorry readers, I have neglected you for far too long.  Truth is, this crazy, busy, plate spinning life of mine has gone into warp drive and this combined with some lovely seasonal lurgies knocking us all down like dominos has left very little time to do any writing.

I'm just back from a  half term break with Jules, thanks to respite support from The Children's Trust at Tadworth and my mum stepping in to hold the fort in my absence.

I  really needed these few days away from what has become our normality to regroup and recharge, things happened so quickly over the past few months and it has been difficult just to catch my breath with the speed of events.

I went back to Normandy, so strange to think that last August Andy and I managed to work the logistics to take a break here without children, it was a lovely few days together, oblivious to the bomb that was about to go off in the middle of our lives.

It is amazing though how quickly it has all become our new norm; chemo, injections, juggling respite, adapting to a new raft of medical terms.

After 5 gruelling rounds of chemo, Andy had scans which showed that the drugs are working, the primary tumour in his bowel  and the secondaries in his liver have shrunk by 30%. In fact the treatment is working so well that the liver surgeons have asked for 2 more rounds in addition to the initial 6 planned to optimise tumour shrinkage.  The plan is then for more scans, followed by a week of intensive radiotherapy treatment on the primary tumour and while that is cooking (the oncologist's term), resection of Andy's 3 liver metastases, followed, once he has recovered by removal of the primary tumour.



Another year over, and a new one just begun...

"So this is Christmas, and what have you done?  Another year over, and a new one just begun..." (John Lennon)

Well hello 2015, and what do you have in store for us?  2014 was interesting to say the least.

It's amazing when you sit down and do a bit of an audit of good things versus rubbish things that happened last year we did manage to squeeze in a lot:-


Good Things

Going to Disneyland Paris
Going to the Caudwell Butterfly Ball and Kylie Minogue meeting Daisy (while Andy sneakily managed to put his arm around Kylie's teeny tiny waist)
Going to Latitude Music Festival in our Camper Van
2 Marathons, 1 Ultramarathon, 2 10ks, 2 Half Marathons, a couple of 20 mile road races and a smattering of club races/cross countries completed
The arrival of Pluto! (our working cocker spaniel puppy aka bundle of trouble)
A lovely family reunion at Andy's cousin's wedding
A few days in France, sans enfants
Celebrating Daisy's 10th Birthday - a huge milestone
Seeing the Poppies at the Tower of London

Pluto (5 months) in the Autumn Leaves

And what do you tell the children?

So how do you tell your children that their daddy has cancer?  How do you tell them that it's advanced cancer and he will need a huge regimen of chemo, surgery, radiotherapy, more surgery, more chemo?

And what about when one of those children has a learning disability?



We don't need Cancer to remind us to seize the day

There has been a big gap since my last post.   I have had a post in draft for a while, one about the arrival of our lovely little cocker spaniel puppy Pluto and how he has turned our world upside down and had such a huge impact on our family.

But along came something that turned our world upside down even more, and has had a bigger impact on our family than we could ever imagine.

Andy, my brilliant, opinionated, insightful, clever, rock of a husband has cancer.

And the world as we know it will never be the same again.



The parent room conversation I wish I could have had with Ashya's mum

December will mark 10 years of me riding the "parent of a medically complex child" roller coaster, I have seen a lot of things, been through a lot and I guess I can sometimes find myself in the position of sharing my experience and thoughts with other parents.

Often the best conversations I have had have been in the parent's rooms of children's wards, late at night when you try and have a few moments over a cup of catering tea, flicking through gossip magazines without really taking them in, your mind preoccupied and mulling over the day's discussions with the medical team.

Are you a clicktivist?

The Ice Bucket Challenge - that all went pretty viral very quickly didn't it?

One minute some sports people in the US are filmed pouring buckets of ice water over themselves  Then gradually videos appeared of people in the US doing the Ice Bucket Challenge for something called ALS.

Then suddenly one day, Bill Gates is getting in on the act, and the Beckhams and then it's everywhere.



Richard Dawkins & the danger of generalisation in 140 characters

You have probably noticed that I don't normally jump on the bandwagon when someone makes a crass comment about disability - I might send a tweet or two but that's as far as it goes, I tend to think the Cllr Colin Brewer's of this world are not the mass voice of reason and intelligence and only represent a minority.

But today I really feel the need to write about someone who commands a huge global audience and is well known for his reasoned arguments based on scientific logic.  Richard Dawkins is a respected scientist, Vice President of the British Humanist Association and Ethologist.  He is the author of many best selling books on Science and Atheism and commands a huge worldwide following.
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