Sunday 28th September

Bit of gap between postings - sorry about that!!
Last week started quite scarily - Sarah and I went up to hospital by hospital transport because Dave had gone on a hockey jolly with Katie to Somerset. Sarah had been complaining of a bad back all morning but Calpol seemed to do the trick.
Following a journey to UCH lying across the back seat of the hospital car, Sarah arrived in tears, saying her back was really painful. By the time we got to the ward, she was screaming in agony. She couldn't stand, sit or lie down without pain and she was shaking by now. She said the pain went down her legs and by this time both she and I were a bit worried.An hour had passed and the screaming hadn't stopped. The doctors gave her codeine tablets and they didn't seem to work very quickly, but after a dose of calpol, everything seemed to calm down and she stopped crying.Before all this madness we are going through, pain like this would have been dismissed with a big dose of calpol, and a comment of 'it will be OK in a little while.' Now, every pain, twinge, headache etc. is greeted with panic. Anyway, about 4 different doctors had a look at her back, and between them and the physio, it was decided it was more than likely a trapped nerve or back pain because she is walking with a tilted pelvis because of her leg. The physios tried to use that as a reason for her to put her weight down, but I'm not sure she understood the implications!
Having said that, physio was quite good this week. Monday was particularly good as she hadn't had any chemo when she did it, so was feeling quite strong. Still no weight on her foot but she did loads of walking about with crutches, and some good bending exercises. It slowed a bit towards the end of the week as she tired, but still, anything is better than nothing.Chemo was OK - felt a bit sick Monday during and just after chemo, but got gradually better as the week progressed. Managed to get to school with Rachel, and even managed to almost write a whole history essay for her homework from Teddington.
Tuesday we went for an X-ray on her leg in preparation for a visit from her surgeon Mr Pollock and Thursday, Sarah and Jack went in the hospital party bus for hearing tests! Sarah had a bad test last time around so Cisplatin was omitted from her treatment last cycle. They were re-testing in case it was a blip, and they might be able to add Cisplatin back in this week. However, they still said it was a poor test - better than last time but still not good.The doctors were going to discuss Friday and make an appointment with Maria for Monday after Sarahs heart echo test (all routine and something she has each cycle) but the opinion is probably going to be that they won't give Sarah Cisplatin again.
The X-ray was OK though, and Mr Pollock dropped by Thursday lunchtime. He had a good look at her leg, and had a bit of a bend and stretch. He said it was looking good, but that she had to get going on it. The longer she leaves it, the harder it will be. She will next see him in December, so the hope is she will walk in to see him, and he will agree to all the rides at Disneyland Paris!! She and I had a calm discussion about that last night, and I think she is finally realising she has to do something. I told her she only has 6 more times in hospital in which to work with Claire, her physio, and that equates to 3 weeks in actual days - this seemed to ring alarm bells as 3 weeks isn't long! She got up to the loo, and immediately tried to put her heel down and stretch her achilles tendon. I think a light might have been turned on in her head at last!!
Thursday also saw us celebrating with sarahs friend Jack as he completed his chemo. He had Osteosarcoma in his pelvis and has been at UCH all the time Sarah has been there, and they became good friends - they were like an old married couple always bickering and moaning at each other, but I think they enjoyed each others company really!! His mum Tiffany always made sarah laugh, and they kept each other going through lots of tough times. Its lovely to see kids finishing their treatment - they go through so much, and the relief and smiles the end of treatment brings give everyone else something to work towards.
The weekend was OK here too - sarah got a bit of a temperature on Thursday night and I did ring the hospital at 2am to see what they wanted me to do as it was 37.8 degrees!! They said wait an hour and check again - I stripped off the duvet and opened the window, then set my alarm for an hour later! By then it had dropped to 36.9, so panic over. She was sleepy Friday, and rested all day.
She also managed to go to her friends sleep over birthday party this weekend, and she had great fun making jewellery and watching scary Jaws films. Back in hospital tonight until Wednesday, so I'll report back on progress during the week!