Wed 16 December

So, it's now a week since we stopped the Olanzapine. I think a few of the things I thought were side effects have resolved - fewer episodes of chin trembling, slightly free-er movement of arms and legs, less hand tremor. However, day by day she is weaker. Less able to walk independently . Has lost a little weight - not as interested in food as she was on the olanzapine plus not sleeping quite as well. Even slower and more quiet. Has worries all the time - especially to do with managing the day-to-day. Plans are a worry but no plans are a worry too.The worries cannot be soothed by rational discussion or challenge. She is also voicing some small paranoid thoughts. For those of her friends and family interacting with her at the moment please take this into account. Even very benign comments can be turned around - for instance she is distressed about one of her friends in Brisbane, who someone else told her was upset not to have heard earlier that Helen was here rather than in Darwin (my fault if anyone's) and when that person sent her a Xmas card it was a trigger for a whole bunch of self recriminations and ruminations.

She does have quite a bit of insight into how she is in some ways - not about the worrying so much - but is conscious how different she is and feels shy and ashamed about it. Really misses her capacity with words and the ability to participate in conversation and social interaction in a lively way - or at all. No interest in answering the phone - possibly sending texts may be a better way to communicate.

Anyway - no doubt this sounds all very doom and gloom. The only constant is change so we'll see what the next bit brings.

Yesterday she had an outing with some long term Brisbane friends and the last few days my Aunt Carol has been here. Carol is a good friend of Mum's and also a very experienced and competent nurse. Louis has taken the chance for a short break and I am enjoying her company and support, as is Helen.

Today we have blood tests, a CT scan (brain and chest I think) - the first since radiotx and chemo, review with the oncologist, possibly referral to and review by the palliative care doctor at the Mater (at last!) and the last lot of this cycle of chemo. That means next week there will be no treatment i.e. a "chemo off week". The results from today will help decide whether it is worth continuing to have the chemo or not. In the week following today the only medical appointments at this stage are: review with the palliative care nurses (again at last - I was quite angry with them for their limited contact and they now plan to come weekly); review with the psychiatrist and review with the GP (another new "innovation" - I think if she has some regular contact with a generalist and co-ordinator it will be a good thing - especially for me!).

Helen's sister Jennifer plans to arrive from NZ on Friday - I am not sure for how long. I will be away visiting a friend for Friday and Saturday but Louis will be back on deck. Again there will be a blog hiatus while I am gone. I will post the medical test results and an update next Monday - and of course more in the interim if anything major changes.