Groundhog days. We're still at Kings.
Radiotherapy was done on Monday on another ambulance road trip to the Marsden and she was very brave. A whole day of planning scans followed by a high-dose blast, a cast of thousands interviewing her continually about her pain and endless moving her from one trolley to another was all too much but with matching headaches and matching relief we made it back to Kings that night.
Three days of post-radiotherapy swelling and increased pain were anticipated (oh yay) and along it came. I now know more about nerve pain and the difficulties of treating it than I ever imagined needing to know - my pain management learning curve has been steep and I can now even pronounce most of the drugs that Rose is taking. Which is lucky because in a few days the plan is that I will be standing in my kitchen surrounded by them.
Pain and home have been the topics of the week and the subject of many, many meetings. As I free fall further into the black hole of terminal childhood cancer I realise how many people are/will be involved and it's as overwhelming as it is reassuring. Going home is not as simple or exciting as it sounds and for the majority of the day I look at Rose and wonder how on earth it will work. But Rose isn't actually ill yet - she is heavily drugged to ease her pain but when the pain is controlled and she has slept off the worst of the sedation there are periods when she is still the funny fabulous Rose of old. There is also a new Rose who is angry and frightened and bewildered and I look at her when she is hurling abuse at me and screaming out her frustration and I realise how far behind the curve she is. And that's exactly where I'm planning on keeping her. A new lump appears on her knee and she whispers, terrified, to me 'what if it is something?' 'You've just got tricky bones, Rose,' says a passing doctor with just the right air of casual and she is reassured. There is no right or wrong way. I am told that parents have regretted either too much disclosure or not enough and that only we can decide what is right for Rose - if I'm doing this wrong for you my Rose I am so sorry. I literally have no idea what I'm doing.
There have been lighter moments - 'would she like her enema before or after her Macdonalds?' - and darker moments - 'how long, how long, how long?' - and still far too many moments in pain. But right now she is asleep and not in pain and she has got me and Snuffles within two foot of her and she is ok.
