A&E is not a dumping ground

Before children  I had never paid a visit to the local accident and emergency department as an adult.  When my first three came along I had a few visits there, mainly for high temperatures which were not responding to the usual treatments at home, two of those visits resulted in Xanthe being hospitalised for care so clearly my instinct that this was a genuine medical emergency was right.

Daisy's discharge from the neonatal unit also came with a gold plated, annual pass to the local A&E department however.

For the first few years after premature birth children are much more susceptible to infections which are far more serious than the usual childhood bugs, we were in and out constantly.

Overcoming my British reserve (all thanks to Amanda Palmer)

When I go to Glastonbury I prefer to wander around around, discovering music that I might not otherwise have heard if I stuck to a rigid list of bands I want see/the mass media suggests I see.

It was during one of these wanderings in 2013 that I found myself at the Other Stage watching the most amazing crowdsurfing I had ever seen.  I saw this incredible woman being carried across the crowds with a huge train billowing behind her, and all the time she was singing, a strong powerful voice, a strong powerful song.  This was my introduction to Amanda Palmer.

Amanda Palmer Crowdsurfing at Glastonbury 2013 (from glastonburyfestivals.co.uk)

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.