28th September

Just a quick update on Louis' and my movements. He is returning to Brisbane on Thursday for a friend's wedding and I am swapping with him at the airport!

In Helen news she and Louis went to the oncologist on Monday and she is continuing on Iressa - going well so far. She has put on a little more weight and has crossed the magic 50kg mark which was my goal. She is walking a little better than she was. All reports from Louis...

I gather they have made at least one excursion to the spa.

Friday 24th September

I am still in NSW where I have been earning money and feeling pleasantly engaged with other people's problems. Doug has returned to Victoria. Louis (and Jed) are with Helen. Unfortunately Louis has come back from Alice with a cold but he is doing his best to be aware of hygiene and infectivity with regard to Helen and to look after himself. This morning I spoke to Helen for the first time in quite a few days and she sounded in really good form. From what Doug says she has continued to vary while I've been away but this morning was a real highpoint - apart from the memory issues it could easily have been her former well self! If things go ok I was hoping to stay away for another week or so and have a holiday in Brisbane after my locum. Louis has a flight booked to go to Brisbane on the 30th so that won't really be possible unless we can come up with someone who'd like to visit next weekend and take our place. Any takers??

Monday 20th September 2010

The weekend before last was surprisingly busy as Douglas and Carol both arrived from Melbourne and Louis was back from Brisbane. We all went out to a fancy dinner at Hanuman's on the Sunday night courtesy of Aunty Margaret and also managed a bit of time in the spa. On Monday Helen was exhausted - so much so that we cancelled her ophthalmology review for the time being. Tuesday she and Carol went out to visit Peter at Absolutely at Cullen Bay and otherwise we had a quiet day. Louis headed off to Alice for the Festival and Carol, Doug, Helen and I went to the Deckchair to watch/listen to "The Spy Who Loved Me" before Carol headed off on another midnight Tiger flight. Through the rest of the week we had a few nice visits from Diane and Shirley, Doug, Helen and I went to a cafe at Rapid Creek then lounged on the Nightcliff foreshore for a bit and on Friday we all went to Kaye's for lunch.
Saturday I headed off down South to do a locum leaving Doug and Helen in sole charge of each other (apart from Jed) until Louis returns next Wednesday. After my locum I plan to stop in Brisbane for a bit of a break so Louis and Helen will be on their own after Doug leaves on Thursday.
In herself Helen has been pretty stable - often tired, sometimes confused but taking joy in company. She has been listening to an audiobook called "People of the Book", some podcasts of the Book Show, poetry readings from various visitors and we still watch DVDs together sometimes. Her vision is stably bad which is why I don't think there's much to be hoped from the opthalmology review. Appetite and enjoyment of food are good. We have a plan to decrease steroids again soon - hopefully this won't adversely affect appetite etc.
Theoretically we are about to trial Iressa (a type of oral chemo targeted at her particular cancer) and then see the oncologist again on the 27th but I'm not 100% sure that this is happening. I think Louis and I are both a bit ambivalent about it.

More photos

Photos from the last few days

Tuesday 7th September 2010

My friend Amber has been visiting for a few days. She flies back today and Louis returns at about the same time. On Friday (the day after Amber flew in from Townsville) we had a presage of the Wet season. The 2 days prior had been intensely humid and muggy. Friday morning the rain began. It poured and pounded and rattled on the roof. The frogs began calling again. It was delightful. The rest of the weekend was dry-ish - no more rain but moist air and rain clouds at times. Amber and I went marketing Saturday morning and in the afternoon she and Helen and I lounged around in the spa (heated to hot bath temperature for Helen's comfort - a bit full on for Amber and me). Sunday we had a visit from Annette - one of Helen's neighbours who hadn't realised she was home again. In the evening we three went to Sky City Casino to hear Katie Noonan play. It was a very fancy set up. Folding chairs on the lawn by Mindil beach, sun setting over the water. Each twosome had an esky with champagne, beer white wine, soft drink and water plus red wine and hampers of delicious snacks. Amber and I were marvelling at the idea that anyone could really make the most of such abundance. Helen said she was totally satisfied with a single bread roll spread with butter and Amber only drank one light beer. Such cheap dates! I did my best to make up for them both there and then and when we left we snuck away with baskets and bags full of goodies to fill our fridge at home.
Monday morning we all drove in to Darwin city and had breakfast at the Roma Bar. We went for a wheelchair walk up the street to show Amber the beautiful Darwin library in Parliament house then retreated back to The Gardens for a day of resting in the chair for Helen and hopping in and out of the spa for Amber and me (cooled down again to a refreshing temperature).

A less upbeat post

Not that it is any different to before but I want to write a description of Helen's state of vision/blindness. I thought this might be helpful for visitors here so they know how to alter their approach to her but also for those far away who are concerned for her and imagining our lives here.
Yesterday I took her back to the Optometrist who saw her at the beginning of her decline in vision back on ~5th August. She had examined her very thoroughly then (more so than the opthalmologist) so I thought it would be good to have a review with her. It was somewhat shocking for me. As I live with Helen day to day and what she can see seems to vary, plus we are trying giving her ongoing increased steroid medication to see if there is swelling around her optic nerves which can be reduced, I was hopeful that she would document some vision.
As it turns out she thinks both nerve heads show optic atrophy which essentially means the nerve fibres are dying which is not reversible. Both eyes are at the level of perceiving light and movement only and in fact the R eye was slightly better than the L even though this is the one that she found had a very constricted field when she first saw Helen.
I was disappointed and puzzled as in the day to day it certainly seems like she can see some things. The optometrist explained that blindness with optic atrophy is not complete blackness. It's more like being in a very dim/darkened room. She can still see shapes and movement and contrast but everything is very muted and indistinct. The optometrist said this is probably as bad as it gets so we will just have to keep living with it. We have another opthalmology appointment on the 13th so I will keep giving her the steroid tablets until then but it seems unlikely that it will improve anything if she does indeed have optic atrophy.
So...practically speaking in terms of interacting with her...she often has her eyes closed while she is awake so don't let this put you off, it is better not to have too many people talking in the room or around her if you want her to engage with you - just gets confusing to figure out who's saying what - so one to one or two to one is better than a crowd. If you are coming up to her it is good to put your hand on her arm and introduce yourself so she knows where and who you are. Even if she knows you well she may not pick it just from voice straight away. Visual input is minimal so sound and touch become more important. We've been enjoying radio and still watch TV shows together although she no longer needs shows with subtitles! She can still tell where objects are if we are walking with the walker to the toilet or the verandah and can reach out for a cup if you tell her it is there. For those who saw her a few months ago her walking and agility is much much better.
I have some audio books accumulated but haven't been using these much as yet.
In the last few days we've received lovely letters and cards from friends Chris and Greg, Peter and Joyce and Margaret. Helen enjoyed me reading these to her.
On Wednesday she and I went to her old Aqua-aerobics class and saw Kaye, Shirley and Bilha plus others Helen used to swim with. We didn't go in the pool but joined them at the cafe for the post work-out coffee. Jed came too and hid under a newspaper when the cafe owner came out as dogs aren't really allowed. He then disgraced himself by throwing up under a chair and after cleaning this and removing him I decided we should move on...
Anyway - just a bit of an update and some practical points. I found the optometrist's description of Helen's vision helpful as I had been imagining it to be better than it is.

1st September 2010

As it turns out Louis has to stay a little longer in Brisbane so Helen and I continue solo. We went to a play reading about the Katherine Flood on Sunday in the last gasp of the Darwin Festival. Neither of us found the play itself fabulous but it was a fun outing and we bumped into Helen's friends Megan and Denise.
Monday was a day of medical review. We went to see Dr K the oncologist first thing in the morning. His impression of Helen's vision was that it may well be a para neoplastic (weird syndrome associated with cancer) or idiopathic (something doctors can't explain) optic neuritis (inflammation of the nerves supplying the eyes. As such steroids may still be some help so we're going on with a higher dose of these for now.
In other medical news the scans and blood tests were all very positive - shockingly so in some ways.
Her lung cancer remains the same size or a little smaller, the pulmonary emboli are no longer visible, the fluid in the right lung is stable. There are no new metastases seen. The blood tests are all better than back in Brisbane - including almost normal sodium.
So...what does this all mean?
He has offered an oral anti-cancer treatment called Geftinib which sounds worth trying. Apparently it has a 50-60% chance of shrinking the cancer and treating para neoplastic syndromes. Side-effects mostly not too bad and can resolve if you stop the treatment. So we are going to wait until the steroid has had maximal chance to help with the eyes then consider whether to start with this new thing for a bit or not.
Certainly Louis and I feel on a roller coaster - the suggestion that she might have new brain tumours causing the vision deterioration seemed pretty dire and we were both anticipating a rapid progression and deterioration. Instead we have this very positive review...
Prognosis is of course uncertain and she still requires a lot of active care to keep her happy, healthy and able to enjoy life but she is enjoying life and it seems it will not be imminently curtailed. So...we go on!