So it turns out this week that following the progress of people we know with osteosarcoma (personally or 'virtually') is a mixed blessing - the wraparound reassurance of not being alone out there and of success stories gone before us can turn in a moment into wraparound terror when things take a turn for the worse for them. Two osteosarcoma patients/survivors/complete and utter heroes whose progress we have followed through the BCRT have this week relapsed with secondary tumours on their lungs. And this has taught me a few things in a short space of time.
Life is crap and randomly cruel. This I already knew but was busy trying to forget.
I am not strong enough to cope with the fear of recurrence for everyone I now care about as well as for Rose.
That this is not a good cancer to have.
And that, having read both their incredible reactions to the news, that I can never hope to be as brave or positive as them. Both adults, one a father of four, and the other a beautiful young woman with her life in front of her who has given us support and strength when we thought Rose might never walk again, are now facing Round Two with humour, dignity and courage.
So that's taken the shine off our week really. And I am now unhealthily and obsessively checking their websites every hour in case I have missed something. And that's the other thing it's taught me I suppose - that quite apart from my fantasy of Rose leafing through this blog as a very, very, very old lady I, like them, am writing this blog for me, me, me as a lifeline to the outside world and as a coping strategy in a world where there are no rules any more and nothing is safe. Yesterday the sun shone all day, Rose jumped on the trampoline for the first time in a year and I was euphoric all day. Today my world is in black and white and there is a sick knot of fear and dread in the bottom of my stomach. And it hasn't even happened to Rose. Told you I wasn't brave.
So anyway. Moving on.
The gastrostomy is out. The last little dingly dangly tube sticking out of my little girl's body is out and binned and after a day at Kings today she is safely back in her rightful place on the sofa ordering me about, ploughing through a pile of dvds and hopefully looking forward to a gigantic supper of real food.
She loved Felix's play every bit as much as we anticipated she would and we loved watching her love it - she's been to another top party (see chocolate frenzy photo), had a bit of a cold, played in the garden and life has been 'normal' and fabulous.
Humour and dignity will be back next time I promise. To Andy and Hannah lots and lots of love.
