Thurs 14 January

Louis says today Helen is a little better having deteriorated quite a bit while I have been away. Apparently she had chemo yesterday and tolerated this well. Had been having a lot of trouble with memory and word finding and was really not herself but has improved a little. Sally and Robin arrived today.

Monday 11th January

Posting from rural NSW:
Louis tells me Mum moved today to the Rehab area of the Mater Private. This means she is now at the Mater Private Annerly Rd Campus, 41 Annerly Rd South Brisbane, Level 5, Room 509. Nurses Station phone number is (07) 3163 1796.
She is apparently very shaky today and having trouble putting words together - currently resting after the move.
I hope she is in a single room and will be allowed to have flowers again.
Family visit of Robin and Sally planned for 15th and 16th.

Saturday 9th January 2010

In good form. Still spiking fevers with no obvious cause but otherwise - so much more positive in her outlook and speech. Thinking also seems better. Mobility better - able to go for a walk around the ward with Doug and me just holding her hands for support. Has started keeping a diary for 2010 - mainly for medical appointments but still...

Thursday 7 January 2010

Neutropaenic.

Fevers. Negative blood cultures. Slightly lower sodium - fluid restriction decreased back to 750ml (which I think is what she was having anyway even when given the allowance of 1000ml).

Had a CXR yesterday. Has a sore ear. Otherwise in good spirits. Slightly physically more frail and off balance than the last 5 days or so - maybe the fevers are to blame. Louis, Douglas, Helen and I went on a tour of the Potter Centre - the Rehab Unit of the Mater Private - seems ok.

I spoke to Dr G (Mum's Darwin GP) about similar/high care options in Darwin. She suggested looking at Tiwi Gardens - apparently pretty new and quite nice.

Once again I urge those from interstate who want to see Helen to do it soon - a) things can change fast and b) we may move back to Darwin....

Wednesday 6 January 2010

We had an impromptu excursion to the podiatrist in West End - the hospital one was on leave and Mum's feet were getting sore. Interestingly not only are the nurses "not allowed" to cut nails in hospital, the podiatrist said he is not allowed to cut fingernails! Despite having every right to deal with toes which I would think are far more tricky. We then came back to Mum's flat at Dorchester St for an hour or so - left in pristine condition by Kaye and hung out for a while. Mum negotiated using the flat's toilet quite well and also the stairs in and out of the side entrance - with a fair bit of support and supervision. I think the suggestion from the OT as of yesterday is they try moving her to the Potter Centre - the Mater's Rehab Unit for a bit and then aim for home discharge with more supports.

I am going to go and do a remote locum in NSW for a fortnight so will leave Brisbane on Saturday and not return until ~ the 24th. In the meantime Louis will be here and a brief visit is planned from Sally and Robin (Mum's brother and sister). This does mean there won't be much blog action for a while but if she is moved to a different bed or discharged to home I will post this so people know where to look for her. If you are a Brisbane based person I urge you to spend some time with her - she is up for it now and the mental stimulation will be good. Supported short walks are also good. She is quite motivated to try to improve her strength and mobility. Overall her mental state is quite a bit improved and we have explicit instructions from the psychiatrist to challenge negative thoughts and false beliefs as soon as they come up.

Brisbane Botanical Gardens

Monday 4th January 2010

Well I'm back after a significant hiatus. In my absence Louis managed fabulously. Helen remains in the Mater hospital in bed 889. She finally had the much discussed blood transfusion while I was gone and Louis said he noticed a big improvement after this. Helen also acknowledges that she felt significantly better the morning after although the experience of actually having the blood was marked by gore and delay with a kinked line and spillage all over the bed. In having had a break I think she seems better too - able to smile and laugh sometimes and to make positive comments, able to acknowledge others' more positive versions of reality when she is challenged on a piece of delusional negative thinking. She is able to read. She can walk cautiously and slowly with a walking stick (easier to manage than a wheely-walker) and self transfer to the toilet given appropriate rails and supports. She is still troubled by the "clenched teeth" and a general feeling of being clenched and locked up. I don't know what this is but suspect maybe it is another paraneoplastic thing. It seems tiring. Benzodiazepines work a bit.

One of the best things to happen while I was away was Mum's friend Kaye came to visit from Darwin. This has been a great success and the particularly fabulous bit of that is that Mum was really anxious about her arrival. She worried about all sorts of things - where would Kaye sleep?, what would she do in Brisbane? - she doesn't know it and has no friends here, she would judge Mum for not trying harder to get better, she would judge Mum for still having chemo...a whole bunch of things which were irrational depressive/anxious thoughts. As it's turned out they've had heaps of fun together and have done some interesting/adventurous things such as seeing Bright Star with Louis (Jane Campion movie on Keats) which Helen found terribly soppy, walking in the botanical gardens with Louis and Doug and me, reading poetry together (including the aforementioned Keats) and just generally spending some good time together.