What can I say? I could just copy and paste last week's blog really! It's all getting very boring and repetitive and that goes for my writing, Rose's attitude, the view from the gym etc etc...no developments this week so far despite best efforts all round. Black cloud of gloom and despondency - broken up by periods of total panic that there won't ever be any progress - hovering over Simon and I but for anyone who is worried that poor Rose is strapped to a treadmill enduring hours of rigorous training - forget it. She is having a great time - about ten minutes after arriving on Monday morning while I was still doing circuits from car park to ward lugging an assortment of Build a Bears dressed in nurses and doctors outfits, sticker books, her own body weight in DVDs etc etc Rose was happily settled at her usual table in the schoolroom making advent candles and calendars, checking out the day's nurses, catching up with friends from the previous week. Er, Rose, sorry to interrupt but it's time to go to hydro... Whatevvver.
So on we go. Half hour hydro sessions in the morning and half hour physio sessions in the afternoon - we struggle through those and then Rose gets back to the serious business of making mince pies, decorating Christmas cards, making decorations - it's all way too much fun and giving her very unrealistic expectations of how fun it (isn't) going to be back home. We definitely need to go up a gear in terms of boot camping it up a bit or maybe down a gear and take whole focus off walking - we are absolutely clueless now about how to take this forward and feel we have exhausted every route. I know that when physios start to say 'perhaps Rose needs some time at home' the subtext is 'we don't how to make this happen any more than you do'. I start every day with Rose as sunny and optimistic as Mary Poppins (today is going to be THE DAY) and finish it as scary as Cruela de Vil but neither approach are having any effect and Rose just isn't playing.
Trying to prove to Rose - and myself - we could do 'normal' things I decided to take her out for a pizza on Monday night. Without the wheelchair! We pulled it off - just - but it was terrifying (journeys from car to restaurant that look like yards, and in fact ARE yards, are suddenly miles) and there was a main road to be crossed which involved me throwing her under my arm and running. I have never been so happy to get back to a hospital ward as I was that night. Anyway we did it, she enjoyed it and I stopped shaking eventually - but it was a reality check for me. The outside world is a bit scary and she's got a really long way to go.
If anyone is going to inspire Rose it's lovely Michelle from the ward at Stanmore. Michelle is one of the play team, about my age (so really young) and had osteosarcoma 25 years ago. She did ultimately lose her leg after the cancer recurred but to begin with she had the same operation and the same prosthesis fitted that Rose has and knows exactly what Rose is going through. She was older and she has a fabulous, driven and determined personality which clearly saw her through and she has tried really hard with Rose this week. She told her that if she was her physio she would pick her up, put her in the middle of the room and take her crutches away...nervous laughter from Rose but I bet she would too. Michelle's story is bittersweet - the cancer came back but she's alive and she has two gorgeous children of her own. Oh for a crystal ball - if Rose is going to relapse I don't want to waste another precious minute on weight-bearing but in the hope, hope, hope that she doesn't we want to give her a future where she runs, skips and jumps through the rest of her childhood, dances at her wedding, runs marathons, etc etc.
So the consensus is no more Stanmore until after Christmas. Very mixed feelings - Rose at home doesn't move off the sofa and when she does move around is so wobbly that she has to be shadowed so the responsibility is huge. We are all as afraid as Rose is of her falling and injuring her leg - I think we are still traumatised by the fall in April when she broke the leg through the tumour. And at the bottom of all Rose's fears I am sure lies this one - that if she walks she will fall and the whole cycle will start again. On the other hand Simon and I are right out of adrenalin, we have come to the end of all coping strategies for hospital life, have had it now with pull-down beds, ward life, microwave meals and living out of a suitcase. We need to spend a couple of weeks together before all four of us fall apart - plus Rose has an array of out patient appointments back at the Marsden anyway next week for post-chemo tests so in fact more Stanmore not an option anyway. Stanmore will hand us over to our community physios who will take the baton on and try to persevere with Rose over the next couple of weeks and then I will take her back in January for more hydro etc.
I am so disappointed at how the last couple of weeks have gone but have got to try really hard not to let Rose pick up on how I am feeling - I need a huge injection of Christmas spirit, perhaps some back-to-back viewings of Mamma Mia, maybe even an evening out with my husband (who?), something, anything that will help fade out this year and make the future look rosy and bright. We'll start with decorating the Christmas tree together tomorrow night and take it all from there.
