Sunday, 30 September 2012

Even if you cannot hear my voice

For those who have not survived this year.  For those we loved and have lost.  For the parents who will never hold their child again.

I have linked to this in a couple of places.  It is a song that, when I hear it, makes me think of all of us, huddled in hospital bays, praying that our child will get better.  It is cannulas in feet when there are no more veins in arms.  It is feeding tubes.  It is bone marrow transplants and months in isolation.  It is what we go through, sitting by their side, hoping.  And sometimes that isn't enough.

Much love to all of you, and such, such sadness.

The end of childhood cancer awareness month.  Please be aware, please don't be fobbed off by inadequate GPs or dismissive consultants.  If in doubt, FIGHT.

Thursday, 20 September 2012

False Sense of Security

I think we have been lulled into a false sense of security by a couple of 'normal' weeks.  I've been working full time, as normal.  Daughter has been managing a more 'normal' couple of days at school.  Son started nursery. Husband working.  Everything as it should be.

And then, she comes home on Monday from her Dad's with back pain, it hurts when she breathes in, and she needs checking over at hospital - is the chest infection coming back?  Are we setting off on the road to pneumonia again?  They think it's just the chemo.  Everything is just the chemo until her temperature spikes, her counts drop and we are back in hospital again.  

Then son starts vomiting with a bug he's picked up at his new school.  And husband has to use his last days of holiday/unpaid  leave to stay off, to try and keep me in work  (He hasn't had a holiday this year at all - all time off was to cover illness).  But we are now on Day 3 of the bug, I am off as husband has got to go in.  Daughter has been taken back to her Dad's to get away from sickness.  

I am feeling fed up, like we are on the precipice of things going downhill again.

I managed 13 days in work without a day off.  

7 months of chemo still to go.  I just hope I am still sane at the end of it all as the continual worry/guilt/sense of failure is taking its toll.