Katie asked me (her father) to write a blog post for her as she's tired and finding the typing too difficult.

She's already explained about the surgical installation of metal pins in both femurs and her right humerus, but I'll give a bit more detail. With those bones being weakened by the disease they were at risk of fracture, so the pins were put in to prevent this from happening, as well as to reduce the pain (which had her almost unable to walk). As she had chemo planned i was important to stabilise her bones to prevent  fracture while on chemo as they wouldn't be able to operate or heal properly, so she'd just have to put up with the fracture. Obviously this would be very bad, so it's best to put in the pins to prevent fractures.

She's already been up on her feet a few times and is finding that the old pain she had is much reduced--instead, she's got the pain from the surgery but we hope that reduces quickly. It's been very difficult though, she's said a bit about the pain management (or lack thereof). The pca (patient-controlled analgesia) turned out to be a kind of sleep-deprivation torture--the initial dose meant she needed to press the button every time it was available (~5 min intervals) to get barely enough to keep the pain at a bearable level, which meant she was desperately afraid of falling asleep and waking up in agony. The ward appeared reluctant or unsure to call a doctor but when one came (after some very gentle prompting by Kate's parents) they adjusted it straight away. This helped a lot and let Katie get some sleep at last. I guess it's understandable that they didn't get her pain levels right, after the first surgery: but the same thing happened after her second surgery, which I think is inexcusable. Other unsatisfactory things have happened, but I won't go into details except to say that medical staff should be given training in communication skills and aseptic technique.

Tomorrow (Monday) Katie starts the next lot of chemotherapy. She's hoping that her legs will be well enough for her to stand up and walk around a bit over the next couple of days, before the chemo reaches the point of making her feel sick. At the end of the week we'll be taking her home at last where she'll finally get some decent sleep and food! The family brought in some chocolate ice-cream for a round the bed session tonight in anticipation of a week without such delights.

time to go