Emotions in freefall this week as time speeds up and we fast forward towards the end of Rose's treatment - a five week cycle has become two weeks with the withdrawal of doxorubicin because of the damage it's done to Rose's heart. Been hoping every day this week that a substitute chemotherapy would be suggested or a modified version of the dox but this hope was (almost) put to bed this morning in a meeting - finally - with our oncologist Kathy. Bit of a full and frank exchange of views re the fact we NEVER see her because she always has her head in a test tube in the lab and spends all her time in the Institute - she totally accepted this, agreed, apologised etc etc doesn't make it better that we have seen one junior doctor after another for months but it was a relief finally to say it to her and not just to each other. She has offered to go back to our consultant at UCH for a second opinion on the heart echo/chemotherapy dilemma and we felt instantly safer - sure they will be in agreement with each other and that Rose's body really has had all the chemo it can cope with but we want to double double double check that this is a good call, that everything that can be safely given has been given. It was agreed that taking into account the interesting time Rose has had throughout treatment we would abandon the clinical trial before it even begins and pin our hopes on the treatment we've had so far. She's had enough - we've all had enough.
We talked about AFTER CHEMO which I never imagined would feel quite so much like falling off a cliff into a dark abyss - Rose will be seen four weekly by Kathy in clinic, will have eight weekly chest x rays at the Marsden and Stanmore will retain full responsibility for the leg including rehab, leg lengthening, imaging for recurrence and follow ups with her surgeon. Tempted to ask if we could have a lifetime supply of low-dose chemo, perhaps move into the Marsden on a permanent basis and just pop out to the shops occasionally, to ask what if and what happens when etc etc but Simon kept heading off neurotic humour/attempts to control the future with his own more sensible questions so I stopped. I can't help it - I'm too frightened as yet to feel any sense of relief or closure, can't remember what it felt like not to wake up with a stomach full of dread, can't imagine a future with Rose the way she was and can't believe there might not be more to come. I'm still grieving the easy mobility that should be every child's right and still burning up with rage and hurt that this has happened to our little girl. I know I need a seismic shift in attitude to take place - but if you have lived your life expecting the sky to fall in every day and then one day it does it takes a bit of getting over. I am going to (try to) follow Simon's lead of living one day at a time, of moving slowly forward with recovery and learning to walk, of celebrating remission while we have it and dealing with the future when it happens and not before. It looks so easy written down!
There's so much to look forward to - time together at home again after a total of 25 days in eight months in snatched days and odd weekends. Everyday things that I will never take for granted again - watching Strictly and Merlin together, cooking a roast, seeing the children together - are round the corner. Christmas is going to be the best Christmas of our lives, Rose's birthday and into a new year which we can only hope will be kind to us. Work, school, life, normality.
So tonight the last methotrexate of the last cycle has gone up - the last blue bag is dripping slowly through her line and it's the oddest feeling. I can barely remember the first chemos now at UCH, Rose in traction and strapped to a bed, no idea what we were doing really and thank god no concept of how grim the next few months were going to be! By the end of next week - barring a sudden change of plan from UCH - Rose's line will be out, the anti biotics finished and the chemo at an end. Tonight nurses are coming and going to chat about today, about the meeting with Kathy, about the future and how scary it all feels, to mark the last ceremonial putting up of the last chemo - and of course to watch Children in Need with me. Our own child in need had a special mention on Radio 2 today from lovely Huw and we stood crying and laughing round a hastily tuned laptop with Rose, nurses and teachers feeling a tiny part of a big national push for children everywhere and the room was filled suddenly with hope and optimism and big smiles.
