Saturday 27th February 2010

Helen and I have been having a really nice time for the last few days. She has been consistently in pretty good form - eating well, positive about outings and activities and able to initiate some entertainments for herself - such as reading. Yesterday she read the blog for the first time in months and managed to keep going with that with concentrated attention for more than an hour which is pretty good! She was sad to see Robin's email about his and Sally's visit and said "He should see me now that I'm a bit better."
She has also been sitting in her chair reading a collection of David Sedaris Essays and enjoying this too although as she points out it's all a bit the same and perhaps best not read too continuously!
Every afternoon for the last week we watch an episode or two of "As Time Goes By" a British comedy with Judy Dench. Mum has always liked it and I found the complete series in the ABC shop the other week. We were shocked to see the early episodes which neither of us could remember when Lionel goes out with Judy and Jean with Alastair - happily by the 3rd series all the right people are with each other.
Physically the only current concerns relate to her eyes which are still irritated, scratchy and red. Also we have been reorganising her room. Louis has organised to get her a mobile bed and a mobile chair which will help with standing up and getting up at times when she is feeling weak. This weekend hopefully we will go on some outings to visit old friends at their houses for a bit of a change.

Monday 22 February 2010

Well, I'm back on deck and Louis has gone off for a few days break up the North Coast. Louis coped really well in my absence - notable happenings included another corneal ulcer - she woke up with it on Tuesday so maybe she rubbed her eye in the night. Sounds like it was very stressful and painful and in the end he had to take her solo up to the local Emergency Department (not easy to get her out of the house on your own). All is healed again now I hope and we are paying more attention to eye lubrication.

Mum seems in good spirits although a little low in energy, strength and appetite!

We have been contemplating the possibility that she could make a trip to Victoria after her next chemo session. It all depends on lots of things though - how she is when the time approaches (a changeable proposition), will the airlines take her, will her doctors write letters to support it - etc. My nervousness about the idea includes that she could get stranded there if something happened and she deteriorated down there but I guess if that happened we would manage. It would be lovely for her to be able to see some of the friends and family who cannot travel up here. I'll keep you posted...

Monday 15th February 2010

Just had an update from my Uncle David who has been minding Helen while Louis and I were both away over the weekend just gone - sounds like he's done an amazing job - kept her nourished on banana and custard alternating with scrambled eggs - 2 favourite foods and managed several outings including movies, walks, a bookstore and an excursion to the back yard. Louis is back this afternoon and I gather they are all going to see It's Complicated".

Some recent shots of Helen's room

Friday 12 February 2010

My apologies for a long gap in posting - words at any rate - we had internet issues and also a succession of lovely visitors and I guess I got out of the habit. Helen is enjoying being home. She does fluctuate a bit day to day but in general is well able to enjoy visitors. Louis and Douglas and I also really appreciate having a break in that if someone else is there we can feel free to be elsewhere for a bit.
This weekend my Uncle David will return and be sole carer as Doug and I are going to Victoria on Saturday for a week and Louis is also away this weekend. Helen is really looking forward to seeing David again even though he and Greig only left last weekend!

Tuesday 9th February 2010

Monday 1st February 2010

Helen comes back to Dorchester St today! Emotionally she is the best she's been for months and in good form to enjoy visitors. Mail should still go to 8/13 Dorchester St but if you are visiting she is in flat 1/13 Dorchester St. We have been instructed to ensure she has supervision and company almost all the time so we'll be figuring out rosters for ourselves. If you are spending time with her she needs to be reminded to drink as she tends to forget. Her current regime is to finish 2 Fortisip drinks plus 240ml of high protein thingamajig. The thingamajig is kind of full on so the nurses give it to her in 8 lots of 30ml through the day. That leaves her with ~ 100ml she can have as water or juice or french champagne.

Eating - she is generally not too keen - but more up for it if she is fed or tricked! As she is chronically dehydrated she can't really enjoy dry or crumbly or over-sweet food. Anyway - more updates as she goes.

She doesn't need too much intense interaction so visiting doesn't necessarily need to be entertaining as such - you can just hang out with her and read to yourself - or her.

Over the weekend we have had Dorothy visiting from Sydney and David from Melbourne which has been lovely for Mum and for us. This week we have Louis back, Doug is still here and Greig will be here on Wednesday so we are well sorted for rosters for now.