Is all we want! Poor Rose - it's either us, physios, doctors constantly badgering her to put some weight down, heel first, take a step, just one step, concentrate Rose... alternating between gentle encouragement and utter frustration we take it in turns to steer her through the days of rehab. My god we had no idea it would be this hard! We thought Mr Briggs had done the hard bit and all we had to do was sit back and watch Rose go from strength to strength, from frame to crutches to walking to normal. Nearly three months post op and progress is painful - three more days of patient coaxing from Nicky the fabulous Stanmore physio and then she had to leave for chemo at the Marsden but she is booked in again at the first available opportunity between chemos in a few weeks time. Frustratingly the angle of the unstraightenable leg went from 20 degrees to 12 degrees and back up to 18 degrees again by the time she was measured yesterday by the Marsden (equally patient) phsyio! Orthopoedic team all in agreement that for the biomechanics of the prosthetic leg to have a shot at function it has to be down to 5 degrees. Soon. Poor love - all other cancer patients at the Marsden happily DS-ing away, watching DVDs and TV from dawn to dusk, glitter glueing their way through arts and crafts time in the playroom and Rose lives in a never-ending cycle of exercises, walking practice, physio sessions, blood, sweat and tears...sooner or later she is going to take her crutches and hit us over the head with them - can't believe it hasn't occurred to her before...
So back in sunny Sutton in a bay with a couple of other familiar faces and her first experience there in term time so explored the hospital school which all looks pretty impressive - a team from the hospital are off to meet Rose's headmistress and teacher next week so lots of support. Hideous chemo back up by eight o clock last night and bang on cue the sick bowls were overflowing within a couple of hours - there aren't enough anti sickness drugs in the world to stem the tide of Rose's chemo sickness it just has to take its course along with all the whispered sheet and pyjama changing involved. Very tolerant room mates this week - as apart from all the throwing up and crying Rose is on hydration bags alongside the chemo which mean she needs to go to the loo every hour so all in all we cause a bit of a stir overnight!
So not quite the well-rested, suited and booted authority figure of a mother that I would like to have presented to meet her oncologist with Simon this morning but more of a ward-weary, slightly shabby at the edges one - but a far better meeting than our last one with her when we seriously doubted whether we had made the right move in leaving UCH. Off to a better start (she had the notes) and didn't break any hideous bits of news and our confidence slowly grew throughout the meeting. She agrees with the most recent decision not to have radiotherapy and we ran through all the pros and cons again - she is also arranging for us to have a meeting with the Marsden's consultant radiologist to go through it all with him - all very reassuring as we were becoming too fear-filled to know our own minds any more. We know the chances of recurrence are what they are and that drastic action would have to be taken at that time - but it's a situation we've faced once and will face again if we have to. We also know now that there are other innumerable scenarios potentially ahead, that we can't legislate for all or in fact any of them and that we have to learn to live one day at a time and negotiate a fine balance between being totally immersed in Rose's care but relying on the professionals to do their stuff. Hard when they all disagree but hopefully we're moving on from that!
We talked about the end of chemo and the drugs trial that we have blithely consented to when it all seemed so far off - another 18 months of weekly treatment with interferon a naturally produced protein hoped to 'tickle up' the immune system and be another possible weapon against recurrence. A real shot in the dark with absolutely no evidence yet of efficacy but how will they ever find more successful treatments with so few cases a year unless the ones they have got put themselves up for it - so we will give it a go and if the side effects are too grim we can pull her out at any time. Of course all the details are coming out now that they don't mention at the outset! She will still get neutropenic, will have to keep her hickman line, will have flu-like symptoms with each dose etc etc but fortunately for them we seem to have signed on the dotted line and will have to at least give it a try - just got to break the news to Rose now!
