Saturday 15th November

The old Sarah is well and truly back!! Both during and after chemo Sarah didn't stop talking and laughing, and generally being her old self. We were putting it down to all the e-numbers in the Fanta fruit twist she was drinking to get the phosphate tablets swallowed, but since going home, and not drinking any fruit twist, she still hasn't shut up!! ! ! She had a great 6 days at school, and a great couple of weekends too, on good form, and laughing all the way.
Tuesday afternoon we went to Stanmore on the leg lengthening machine to make sure the cog inside Sarahs metal prosthesis wasn't too sticky. We listened to it with a stethoscope and it sounded horrible!! Whirring round nicely though and she didn't feel a thing!! She was 2 minutes on the machine and it got lengthened 0.05mm.
Wednesday morning she had bloods taken by the community nurse - the line was a bit sticky but it gave blood so all fine(more on THAT later!!)Wednesday night we went to the theatre with 2 of Sarahs friends, and had a lovely, giggly night out!
Thursday afternoon, we went to the ENT Hospital for what we were expecting was a fitting for hearing aides. We saw a doctor specialising in hearing aides, and she ran Sarah through the same thorough tests she had pre cycle 6 2 weeks ago.Not only did they make her press a button when she heard the beeps, but put noises through her ears, and let the machine decide what she could and couldn't hear.She asked her loads of questions about how she felt she was hearing, and contrary to the previous doctors opinion, Sarah DOESN'T need hearing aides. In fact, she said there is absolutely nothing wrong with her hearing or ear function at all!! I can imagine the doctors at UCH will have something to say about this, as they have omitted 1 dose of Cisplatin because of the hearing tests she has had!! I'm not best pleased either!! Of course I would have liked Sarah to have had every drop of every drug they could throw at her, just to make doubley sure all those nasty cancer cells were blown away.
Anyway, to cut a long story short, she will be referred to a teacher of the deaf, to pinpoint why she isn't hearing - the doctor said it is psychological - brain overload, so she can only concentrate on one thing at a time. She has had so much to deal with, and so much information to take in, her brain is shutting some of it out.(mostly me nagging her about physio funnily enough........)She will undergo a hearing test for speech, and then they will decide how to overcome it.Sarah was very slightly disappointed as she had already chosen pink hearing aides with glittery bits on!!
Yesterday, we had the day from Hell. Nurse came at 8am to take blood again. The line refused to bleed and she could get nothing!! Decided to go for physio in Hounslow first and then take her to Ham clinic to see if it would shift it with all the moving around.Physio was OK, but she said there is very little they can do until she can get her heel on the floor and stop her foot from being inverted. We have another appointment in 3 weeks and have to get it down by then or we will just keep going round in circles.Went back to Ham and the nurse tried again for blood - nothing - so we were sent to West Middx Hospital for them to try. Sarah was dressed as a ladybird in aide of Children in Need and was by this time kicking up a fuss about missing all the fun at school.12.15pm, we got to West Middx and waited for a doctor to come and try to access the line. Eventually one came at 1.30pm, tried and failed. I pleaded with a sobbing Sarah by my side to let us go home until after school, or she would miss the whole day that she was so looking forward to.They agreed, and we went to school, arriving at 2.15pm, ready for last lesson (Music!!) only to finish at 3.15pm. I picked Sarah up again with her friend Georgia and we went back to West Middx. They injected an enzyme into her line to dissolve any gunk that was blocking the tubes, and we were sent home for 4 hours. At 8pm, we went back for them to try and get it out again. Got there at 8pm, and waited 2 hours 15minutes for a doctor to write up a chart, just so a nurse could withdraw the enzyme!! MADNESS!!!! At least Sarah had her friend Georgia there to keep her company and we had a TV in the TV room to watch Children in Need on.We went home and Georgia slept over, so although the evening was ruined, Sarah at least had a friend to stay!
Chinese for tea tonight in front of X Factor and back in to UCH tomorrow night again for the penultimate chemo, as long as she's passed fit. Everyone keep your fingers crossed please - we don't want any delays now!I really want mine and Sarah's life back.