Saturday, December 12, 2009

Saturday 12th December

Louis' 36th Birthday today! His feast on the roof went really well - a blow up pool, hammock, daiquiris, bouillabaisse and olive bread, salads, friends, Helen and Uncle Robin, babies and small children and lightning without rain or thunder. Today he has lots of work stuff to do but Robin is flying home and Louis, Helen and I will have a birthday lunch together I think.
Anyway - as promised here is some medical updates.
Overall as regards physical health Helen is doing well - she is eating and sleeping ok, trying to do a little light exercise daily. Her mental health is bad. She is still depressed and anxious - by which I mean psychiatrically depressed not the everyday kind of flat or sad. I really want to emphasise this because I am finding that many people - perhaps unfamiliar with mental illness or fearful of it - want to try to redefine how Helen is as something relatively trivial and something she can be "cheered up from" or "counselled" out of. This is not helpful to her nor does it make for straightforward interactions with others and also...it's driving me nuts!
The qualities of her current mental state - she finds it hard to think - thought processes are slow, it is easy to get stuck on an idea or thought without completing it; making decisions and assigning priorities are very difficult - asking her polite questions or offering her options does not work very well but it's really hard not to do; physical movement is also slow - more on that later; she easily gets stuck just staring at things; mentally she feels quite blank - as if there are no thoughts inside and the thoughts can also go in the middle of a sentence. Having said this there are times when she speaks fluently and coherently with a normal stream of though - this seems more successful when talking about something removed from the day-to-day and present realities. The other aspect of the anxiety and depression is "catastrophising" - this is better than it was but she is apt to leap to really extreme and unlikely negative outcomes for all sorts of situations and it seems as if the drive to find the thing to worry about is so strong it will almost make things up. This is not rational. It does not need to be dealt with rationally. Helen does have insight into this and you can challenge it explicitly. Having said this Louis and I try to avoid obvious triggers - i.e. now is not a good time to tell her about frightening, threatening or ambivalent situations or issues. The other feature of her current mental state is fear. She is easily and intensely frightened by all sorts of things. This includes plans and suggestions for pleasant activities. This is also not rational. It is not good to give in to this fear and avoid activities. She needs support and distraction and to be gently bullied and encouraged to do it anyway.
So - enough of the description. What are we doing about it and what's the prognosis?
She is still seeing Dr A - the psychiatrist her took her on when she arrived in Brisbane at the Mater. She had been continuing on a low dose of olanzapine - the antipsychotic started for the mania which really helped for the mania. Its ongoing side effects included sedation - helping with sleep at night - and increased appetite - helping with maintaining her high calorie, high protein diet. In fact I think the side effects were the main benefit in the last few weeks. Having said that, when I returned from Melbourne Helen looked to have developed one of the rare and horrible antipsychotic side effects - basically like developing sudden Parkinson's disease. This includes involuntary quivering of her chin and hands, small hand writing, stiff arms and legs, walking on the spot and staring. These have all been slightly evident for weeks but suddenly became much worse and also no doubt more obvious to me due to having been away. When she was first depressed and before starting antidepressants I tried reducing the olanzapine but she became much more agitated. Now she is on antidepressants the agitation has reduced generally so it seemed it might be a good time to try withdrawing the olanzapine again.
On Wednesday she saw Dr C the oncologist. She agreed with my concerns about the possibility Olanzapine was causing Parkinsonism and that we should decrease it. In the end I stopped it and luckily when we saw Dr A 2 days later he agreed this was the right thing to do. I think there has been an improvement since Wednesday in those Parkinsonian effects and apparently there may continue to be some improvement until Sunday. After that, if they persist, Dr A says it can be a primary effect of the cancer - hopefully not.
He also said to raise the cipramil to 60mg a day.
Last Wednesday the blood tests were really as good as they could be. Her sodium is slightly improved despite the cipramil. She has another round of chemo next Wednesday and before that will have a CT scan. This will be her first imaging since the radiation and chemo started so it will be interesting to see what it shows.
Anyway - enough from me for now - please do still spend time with Helen and take her out - just make allowances for her state and don't have too many expectations of it. Hopefully the antidepressants will make a real difference in the next few weeks and a bit more of herself can emerge.

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