Wednesday's enthusiasm and optimism a thing of the past after a frustrating few days with Rose at Stanmore. Simon brought her back on Friday night and although we examined her from every angle in every position we couldn't honestly see any improvement from this time last week. Every conceivable support is being put her way including hydro, 'land' sessions with their head physio, opportunities to go to the gym between sessions, riding their hospital tricycle to and from the gym to build up leg strength etc etc and Rose is the only one not committing 100 per cent - or even 10 per cent - to the programme! We are so lucky and so grateful to be getting this kind of support - four weeks of rehab since surgery so far - there are dozens, probably hundreds, of children and adults who would bite their hands off for the chance to have this kind of intensive support and of course I don't expect her to realise that but at some stage soon Rose is going to have to start trying.
Just as at the Marsden the world has cancer, here the world is in a wheelchair or on crutches, with one leg, no legs, recovering from spinal surgery etc and pressure on their resources is as everywhere high. They have a team of overworked physios who literally fly from out-patients to the wards covering all areas of the hospital seven days a week and getting patients who have practically just come round from their anaesthetics back on their feet. In Stanmore terms Rose is ancient history - operated on in June she should have been on her feet MONTHS ago. All very demoralising and frustrating - this is not the beginning of rehab for us this is weeks and months in and we don't seem to be getting anywhere. Even the unendingly patient Tracy (head phsyio) has told Rose that she is the only one that can take the next step (hah) to move this on. Rose nods, agrees, takes it all in, promises to do it next time and then trundles happily back to the ward with physio over so she can watch a film, do some cooking in the schoolroom, make some Christmas cards, etc etc. Aaaggghhhh. I resign.
We all want to start to get back to some kind of normal now - I am surrounded by people telling me how GREAT it is that it's all over, how FABULOUS it must be to all be at home together at weekends, how WONDERFUL that she's come through it and I want to SCREAM. Having Rose at home is not great, wonderful, or fabulous it's really, really, really hard work. She has absolutely no independence from us yet, cannot move on her crutches without adult supervision, cannot go to the loo or get dressed or have a bath without one of us with her constantly and our lives bear absolutely no resemblance to the lives we led before. We also cannot keep up this two adults to two children lifestyle for much longer - real life is coming back whether we like it or not and we have to try to move Rose forward as much as we possibly can before the end of this year. I honestly think in her six year old mind she thinks that one day she will just wake up and be able to jump out of bed and be back the way she was. I wish I could make that happen for all our sakes but I can't and she has got to start trusting in this fabulous amazing leg she has been given and start using it. Anyway. Got that off my chest.
There were good things about the week too - north London friends whizzed in and out with food drops and presents and Simon met inspirational and life-affirming Reece. Reece is 13, had osteosarcoma 6 years ago and is now playing football for his school. Most significantly for us he, like Rose, had a pathological fracture through his tumour and minimal surgical margins on excision. I love that boy. He is my counter to the father we met at the Marsden whose son's bone tumour had recurred within four weeks of finishing chemotherapy. Four weeks. Ohmygod. But in a world where Reece is out there living, breathing, walking and playing football there is hope and optimism and a future opening up for Rose. Perhaps we could get Reece to teach her how to walk again...
We are going back to Stanmore for another week in the morning and are as usual hoping and hoping and hoping for a breakthrough. We have tried not to make it all too much like hard work this weekend for Rose but probably failed - we cannot stop ourselves from constantly repeating a mantra of 'weight down, Rose, straighten your leg, put some weight down, come on Rose, ROSE!!' as left to her own devices she literally would not move between waking up and going back to bed. We're both shattered, short-tempered and for the first time in our lives understanding how people go out to buy a bag of sugar and never come back. We are really, really grateful for another week at Stanmore and if she doesn't make the most of it I am going to kill her. Can't say fairer than that.
