We're way beyond good and bad omens here but the rain is literally bouncing off the windscreen on the way to the Marsden and it is Friday 13th. It hasn't really even got light by the middle of the morning and we wait for hours to see Kathy. It's Friday again - the clowns are back. I don't think they're funny any more. The only reassuring thing is that Rose is safely in her classroom taking her weekly spelling and tables test. Whatever they are about to tell us they can't spoil her day.
So anyway. Finally we see Kathy who is nervous and calls Rose 'your daughter' in a far more formal then usual way. Unbelievably the news is worse. There is something, something that they think is a bone lesion, on the bottom third of the tibia in Rose's right leg. It looks like a bone metastasis. Full house. Bone and lungs. We are disbelieving and while Kathy is still talking the whole room spins and humiliatingly I have to spend the rest of the meeting lying on her examination couch. Better than last week when I threw up in her sink. The delay has been Kathy speaking to Professor Jeremy Whelan at UCLH for a second opinion - he says he has had good outcomes with 'one or two' patients following bone and lung mets who have had follow-up chemo. We shake our heads. We've had seven sleepless nights and almost two years prior to that to discuss this - she's not going to die bald, emaciated and in the Marsden. Kathy doesn't even put up a token protest. I realise that if we demanded the full works - surgery, more chemo, radiotherapy - they would do that too. But it has come back fast and in two places - Rose is not going to win this. And we're not going to buy ourselves more time with Rose at her expense. Kathy goes straight into talking about symptom management and pain relief. We are having a palliative care conversation about our seven year old. She asks us to take Rose to Kings after school for a plain film x ray of her tibia to confirm the bone scan but tells us she doesn't see what else it could be. We are really calm and leave.
Back in the car in the lashing rain in the hospital car park the calm breaks and we are both hysterical - it is inconceivable that 15 miles away our seven year old daughter is running round a playground with these tiny tumours in her and they can't save her life. They've got it wrong, made a mistake, we've made a mistake, we must do more chemo, six more cycles might buy another 18 months, I have to have that time, and on and on until we finally stop crying. It takes too much energy and we need all the energy we have just to keep breathing.
We tell Rose that Kathy forgot to get an x-ray of her leg on the Monday and we are off to Kings. She's not alarmed. I go and get Felix and Simon takes Rose to Kings where unbelievably they can see nothing on the x-ray on her tibia. They speak to Kathy and she asks me to bring Rose back to the Marsden in another week for a CT to confirm whether or not there is anything there. Jesus Christ. This is a really important distinction. If her cancer is back just in her lungs we will go for thoracic surgery and take our chances on tumour removal without chemo but if it's back in her bones too this is pointless. We cannot believe we have to wait another week to find out. But we do.
