So in the end it did come down to a tantrum. And this time not from Rose! A great big snivelling sobbing ranting raving tantrum with snot everywhere and absolutely no dignity - not my finest hour but nothing they haven't seen before at the Marsden I'm sure. I couldn't hold it back any more and all the things best left unsaid were said and all the worry and the fear and the rage and the exhaustion poured out. Prompted by what - a lost two days trying and failing to get an appointment for a second opinion at the Brompton on Rose's heart was the trigger but of course not really that - just worry and fear and exhaustion etc.
Post-tantrum and when the doctors had wiped the shock at such loss of control off their faces the penny finally dropped that Rose really does NEVER go home - that when the door closes behind us here we are either at Kings or Stanmore, finally a recognition that she is having a spectacularly awful time with infections, with these bloody bloody bloody line infections that will not clear and all I want is someone to reassure us, to take control, to take responsibility and preferably to PUT A PAIR OF GLOVES ON BEFORE THEY TOUCH HER HICKMAN LINE... So many doctors means very little continuity and it is like starting afresh every day. We are crying out for a bit more contact with Rose's lead oncologist but have only met her a couple of times since we came in July - we wouldn't have known any different of course if we had had all our treatment here as planned but the leg break meant this dual-centre care and we are struggling to cope with the Marsden's hands-free style if we're honest. When something like this heart thing crops up there is seemingly no one in control, no one making a plan and even better telling us what it is.
So hence this morning's outburst - each exhausting little skirmish won or lost on Rose's behalf feels like fighting on the outskirts of the BIG BATTLE. Rose has cancer. I write the words and it still isn't real - eight months in I am still alternating between disbelief and a kind of awful normality. We are so exhausted now - March feels like several lifetimes ago, last Friday feels like a lifetime ago. The last few days shuttling Rose around London, taking in scary new developments every five minutes and recalibrating what is going to happen to her all the time have put a huge strain on us. I don't know why now after everything we've been through but we seem to have reached some kind of limit and need to dig deeper to find the strength and energy to carry on. Tonight my head is splitting and I am really homesick - I miss Simon and Felix, I miss my life and my duvet and I want everything back just the way it was. Tomorrow is another day thank God - this one was awful.
Anyway the appalling tears and snot moment must have moved the cold cold heart of the ward manager as I am still here tonight on a quieter than normal ward. Who knows - tomorrow we may have to decamp but either way the anti biotics are still going in iv every eight hours for the line infection, plus more for the c diff, so no chance of home this week anyway regardless of echo appointment and in fact her blood counts are too low for chemo anyway. She is bouncing along the bottom with a pitiful white blood count of 1, is neutropenic, platelets low etc. Good times, good times as Felix would say!
Anyway it hasn't all been bad! Barack Obama has won the US election and despite Rose's refusal to let me watch any of the coverage the feel good factor has definitely trickled my way - I haven't been this excited about American politics since Martin Sheen and Rob Lowe were in the White House. And Christmas is coming to the Marsden - the play team have started to design each wall and the children are all busy creating polar bears, snowmen and santas as fast as their fingers can glue and stick. Six weeks and two days till Christmas - and I am praying to the god of line infections and chemo to get us out of here by then.
