Saturday 20th August

Several days run together...
On Thursday Helen's fried Camille (previously of Darwin but now of Brisbane) visited and read poetry and spoke with her for several hours. Helen remembered the visit when I saw her on Friday and had really enjoyed it. Unfortunately Helen's itchy skin has continued to be a problem - which it was when we first started the Iressa. The ward round Friday morning happened to be with Dr M who is the palliative care doctor we first met when Helen was diagnosed and whom we have had the most to do with. She and I talked the options through and have decided to trial stopping the Iressa again. My only reasons for staying on it are that in the last few weeks of restarting Iressa she has really improved mentally and most of the "para-neoplastic" weird things have resolved. She (and we) find the bizarre cancer side effects distressing. However, it is possible that the mental improvement is down to treating her UTI, the itch is really unpleasant and has not responded to the anti-itch drug we used to use and we just don't know with the weird para-neoplastic thingies so...seems worth ceasing it again, especially while she is still in hospital and can have bloods to monitor her sodium etc.
The other medical/nursing issues I have referred to...she has started on a treating dose of Clexane again (which is the daily injection of a blood thinner she used to have before). In itself this doesn't bother her - or so she always says - but I am in two minds about whether she should stay on it as she has 2 skin tears at the moment and both are continuing to bleed a bit. She is still on oral steroid but at least back on the dose she used to have at home (they doubled it when she came in to hospital. As far as her mobility goes and the idea of rehab - it is not good news. The rehab physician came to assess her and found her cognitive capacity too low to imagine she would be able to get any benefit out of a rehab program - mainly due to memory issues. I actually agree with this and it is part of what was not-so-good when she had her rehab at the Epworth. A big improvement initially due to increased activity and concomitant increased strength but no capacity to retain and build on this improvement on her own without someone else (e.g. me) standing by as coach. Also it was pretty well impossible to stop the carers from dressing her and washing her and drying her...and often wheeling her to the toilet rather than assisting her to walk.
Currently Helen is rarely helped from bed and the nurses have asserted to be on several occasions that it takes three of them and is not safe for them or for Helen. When I heard that on Thursday I asked if I could help/see what the problems were. The nurse I spoke to wasn't up for that - I think she was more interested in letting me know that they weren't keen to move her anymore - I felt quite upset and angry and had to ask her not to talk to me about this anymore. I think I was having flashback emotional fallout from other times when she has deteriorated through what I perceive as poor care and neglect, distress at her current physical state and deterioration and just a general melt-down owing to the last week or so of feeling stressed and trying to be Helen's advocate again. After I got over this I went down to Helen's room and got her out of bed on my own and popped her in the shower chair. I didn't strain my back. I didn't hurt Helen. Her nightie was stained with blood and food and she had pretty much only had bed baths since arriving in hospital so I thought a real shower would be good. i also wanted to see for myself what the problems/issues are with her mobility.
There are 3 main issues - all due to being allowed to lie in bed for 2 weeks as far as I'm concerned. Her achilles tendons have tightened again so her feet cannot bend to 90 degrees. This means that standing is very hard as her centre of gravity is pushed back and she tends to respond to this by leaning away from you with all her weight. Her overall strength - in legs and core is decreased - balance is harder in any case as she has not even being sitting in a wheelchair let alone walking. Weakness in her legs also makes standing more difficult and she has a tendency to try to do this with bent legs which actually makes it harder - like doing a partial squat exercise. Stamina is obviously very poor. Finally she became fairly breathless as I transferred her and then when she actually had her shower was somewhat confused. The nurse (same one from before) and I showered her together, cleaned her skin tear, and shampooed her hair then rubbed in moisturisers and creams. Helen enjoyed it all as a sensual experience and was much cleaner at the end. However she did tell me "she wanted to let me know what she had won" and also told both me and the nurse that we should"go and look at the place where the number plate goes, on the front, on any car!" When we asked what we were looking for she said "I think it will hit you in the eye when you have a look" a phrase which caused the nurse some puzzlement until I translated.
After the shower she was tucked comfortably into bed for a sleep as she was exhausted. But the process of transferring back to bed was much harder than getting her out (partly due to tiredness and partly due to the "too many cooks" phenomenon).
The upshot of all this is I am prepared to accept the rehab physician's assessment and the nurse's assessment and...Helen's personal preference to stay in bed. I hope that we can manage to organise/provide good enough nursing care that her skin remains healthy and she doesn't deteriorate too rapidly.
The next step if she lives more than a few weeks will be transfer to a nursing home. Helen, Louis and I are all accepting of this and there is a pleasant new one nearby the Gardens. The biggest downside from my point of view is the staffing ratios (very light on I gather) and the food. Helen is eating so much less quantity, quality and lower deliciousness food since leaving her home and her personalised care with Jo and Susan. It does seem a shame. I have been thinking perhaps Jo will agree to some more part time work and "special" her at the home but will leave this for now as it is all unclear what is to happen next. For now she will go on as she has done and certainly the nursing care in the hospice is far and away the best we have had in any of our various hospital and nursing home stays. So despite my complaints above we will continue to appreciate it as best we can.

This weekend Susan and Freckles have left our household to return to their lives in Castlemaine. A sad time for all of us in many ways. My new housemate Gabe and her baby Tenzin came to visit Helen with me on Friday morning. Tenzin is 10 months old and a charming babe. Helen enjoyed meeting him and expressed welcome to Gabe and her family. This weekend my friends Stuart and Michael are visiting for a few nights from Qld and we will all spend some time with Helen on Sunday morning.
Next week I will be away for five days and Louis will arrive on Tuesday.