Old hands at the Marsden now - we know that one remote control changes the channels on three different beds' tv sets (while all trying to watch different programmes), we know which nurses are great and which are miserable, we know that if you put your food unlabelled in the parents fridge it WILL be thrown away, we even know the names of some of the kids here who were here last time and we know that CHEMO MAKES YOU FEEL CRAP! Once the yellow liquid makes it all the way down the tiny tube from drip stand to hickman line you know there's no going back and the only thing to do is head for the sluice and stock up on sick bowls, tissues and water - and hope that the other parents on the ward are deep sleepers and really really tolerant. Which of course they are because their nights are pretty similar - there are three of us in our bay this week - bit like having triplets who all wake up at different times of the night I guess. Aaagghh - the nights so the worse bit - trying to cope with sick bowls and bed pans in silence in the dark!
Most of the other children seem to have leukaemia and of course cancer is not competitive but if it was...please...we have so won - these kids can leap out of bed and go to ride scooters in the garden, they run up and down the corridors dragging their drip stands behind them, compared to Rose they seem to exude health and mobility. Rehab and physio not going that splendidly for Rose at the moment and her leg seems permanently locked at half mast despite us nearly killing ourselves and her to do exercises after exercises to try to get it down. Physio at the Marsden has gone away until September and the community one never transpired so we are feeling overwhelmed with the responsibility - not helped by Stanmore threatening us with the fact that if she can't get it straight she won't be able to go in the lengthening machine to match her growing leg. All of this adding to combined blood pressures and ageing process Simon and I just about at wits end with leg - only six weeks ago we felt we had been given this fantastic present by her surgeon and now we are worried it won't do what it needs to do. Now hoping we can get back to Stanmore next cycle for some intensive physio as in patients - perhaps in the hands of a boot camp physio her leg will fall into line!
We have become so totally blinkered to the outside world - hospital routine and physiotherapy is all there is. I know that life is going on outside this hospital, that the Olympics are on, that it's raining (there is a god) and I don't honestly think all this is interesting to anyone apart from us but hey if you're reading this you logged on and have only yourself to blame...! I think it's probably impossible not to become the world's biggest cancer bores after so long steeped in it all and I've long since given up trying - we even bore each other and certainly need a break from searching endlessly for answers to each other's questions and fears. I'm not sure what the answer is but think it might lie on a Caribbean beach somewhere...
