More new and scary experiences starting this weekend with Rose - having been constant in-patients at UCH and Stanmore we have never experienced this mysterious part of the cycle when you come out of hospital and seemingly wait to be taken into your local hospital with 'febrile neutropenia' - more terms we never imagined becoming familiar with! But here we go - district nurses came for the first time today to do an endless list of dressing changes, blood taking, bone marrow stimulant injections etc etc and tried to leave before they noticed I was attached to their ankles begging them not to leave me alone with her...haven't been this nervous since first bringing Felix back from hospital as a newborn and putting him on the floor in his car seat, looking at one another and saying 'what now?'... Anyway seemingly we sit and watch and wait for her temperature to go up and then we head straight for Kings, if we're not already in there having a transfusion or the bone marrow thing or something else - can't remember what all the other things are but apparently we mainly look out for her feeling unwell. Which is going to be hard to spot since she is feeling pretty unwell most of the time - aaaggghhhh.
Day got off to a good start anyway when we got up found out that a burst mains water pipe had knocked out our water supply - Simon phoned the emergency line, said the words cancer and district nurses and within about twenty minutes a Thames Water van had screeched to a halt outside the house with enough water to keep us going for the rest of the year. We're now selling it to our neighbours. So onwards - every second of being here with Rose is about Rose: what was once a kitchen used for preparing and serving meals is now a small independent pharmacy stocking every available painkiller, anti-sickness drug, dressing pack, syringe, gastric feeding pack etc known and we stand there diligently grinding tablets, drawing up syringes, measuring feeds, giving drugs and then realise Felix has been waiting patiently for his breakfast for several hours...the hardest thing for Rose is her lack of mobility so not only is she feeling grotty beyond belief but cannot understand why she still can't walk. Lots of heavy lifting going on and if we're not careful Simon will be the one in traction next!
So - trying to have a 'normal' day had a bbq lunch and now watching a dvd with popcorn all together which I will never ever ever ever take for granted ever again. Rose is exercising her right not to speak or eat today but she's here and not in hospital and that feels great!
