Friday 31st December 2010

Louis and Helen are still together in Melbourne and from the sound of things having a pretty nice time. They were able to visit 2 different family houses for Xmas day and have been having lots of visitors at their house in Northcote too - both family and friends. Louis had a few days break in Castlemaine and Susan kindly came to stay with Helen.

On Monday the 3rd Helen will go in to the Epworth Rehabilitation Hospital in Camberwell for 2 weeks - Louis plans to stay on at the Northcote house until the 9th so any mail on its way there will still get to her. I will join them in Melbourne on Monday the 3rd - in fact Louis plans to collect me from the airport on their way to the hospital! Douglas is looking after the dogs at Helen's house in Darwin.

photos from natsaha's darwin xmas

Wednesday 22 Dec 2010

Louis and Helen have moved - they are staying at 91 South Crescent, Northcote 3070 and will be there until 3 January. Louis' mobile is still the best way to reach them.

Saturday 18 Nov 2010

Well I am back in Darwin and Helen and Louis continue in Mont Albert. Helen is enjoying a weekend visit from her friend Judith formerly of Darwin but now based in Adelaide.

According to reports from Louis and Sally all is going very well.

Before I left Melbourne we all went to the Epworth Rehab hospital for an appointment with a rehabilitation physician called Dr M. She was lovely.

We have been offered a 2 week admission from the 3rd to the 17th January so Helen will stay down for this. I think it will focus on physical rehabilitation so we will wait to see whether it is still worthwhile going ahead with private neuropsychology. Helen's memory/cognitive variability continues to amaze, puzzle and fascinate me. There must be some quite specific parts of her brain affected and yet she is so variable! It's very hard to make sense of it. Dr M was not overly hopeful that brain function improvement was likely or possible with rehab but I think it's worth seeing what happens - afterall she had only a short time for assessment and the only observation she made was relating to short term memory deficits which although true is not the whole picture.

I have begun the laborious process of Centrelink forms again - quite Byzantine but hopefully with a good outcome.

Reverie Harp arrives in Mont Abert

Tuesday 14th December 2010

Life in Melbourne seems to be going along very well. Over the last week Louis and Sally have shared Helen's care in Darwin. There have been a wonderful array of visitors, including (but not limited to) Margaret, Julie, Cynthia, David, Carol, Greig, Robin, Mary Lou, Kathy, Tim, Darcy, Claire, Jamie, Barbara, Lindsay, Ramon, Mary, Susan.....

Louis has succeeded in organising all the necessary showering and injection visits (not as easy as it sounds) and also attending a Melbourne GP with Helen.

Sally has been generously abandoning her home responsibilities with dog, rabbits and Lindsay to spend time with Helen during the week and give Louis a little freedom.

This morning I met with Louis and Helen in Kew and we went to see Dr F - an opthalmologist recommended by a friend of mine.

Essentially he confirmed that Helen's visual loss is permanent and likely to slowly decline. Almost certainly due to vessel damage - caused by the radiation treatment - which may have occurred anywhere along the course of the optic nerves throughout the brain.

Her left eye is down to just very faint light perception only, her right can see colour, shape and light but no detail (cannot make out faces). He made it clear that nothing we do will help to improve the damage that has occurred (and nothing we could have done would have prevented it). We are unlucky that the blindness developed so soon (relatively ) after the radiation as some people would have years after treatment, but apparently all people receiving brain radiation will eventually sustain significant visual loss as a result.

This is sad news and discouraging but not a surprise and it is helpful to have it stated so clearly. Also we learnt she should be eligible for a blind pension (and associated health-care card) which is really good news for us and something we weren't aware of before.

The delightful happenings of this afternoon - after the appointment Louis and Helen and I went out for coffee then back to the Mont Albert apartment where we rendezvoused with Sally and Lindsay. Later in the afternoon Alison came to visit from Castlemaine bringing with her her beautiful new reverie harp for Helen to have a go of! She has offered to lend it to Helen for as long as she would like to...

Helen and Louis head to Melbourne

Well it's finally done! An amazing amount of logistics have been negotiated and Louis and Helen are even now winging there way down to Melbourne for a holiday.

In the first instance they will be staying in a serviced QUEST apartment: 105/741-745 Whitehorse Rd, Mont Albert 3127. I think the booking goes until the 22nd or so. The phone number there is 03 88431500. Louis will be the main point of contact however and is going to manage her social calendar plus the odd medical appointment as we hope to take advantage of Melbourne's more extensive services.

Louis' mobile is 0401 662 511

Wednesday 1st December

Today Helen had her Oncology R/V with Dr K. We discussed the CT Scan - either unchanged or slightly improved, Helen's state of well being, medications and plans for the future.

Essentially news is all good. He said that the median time of survival for people who have brain metastases at diagnosis is 6-9 months. As Helen has already lived longer than that she is outside the typical. It is a good sign that the brain mets are no longer visible on imaging (although doesn't guarantee they are gone for good). The main cancer in the lung is still there and that part of the lung is still collapsed. The amount of fluid around it is a bit less than previously and does not require any action. The size of the main cancer is the same or a little smaller. The clots in the pulmonary vessels are no longer evident.

So - his follow up plan is to keep going on the Iressa indefinitely, repeat chest Xray and blood tests in 2 months and repeat CT scan in 4-5 months. The implication being she may well live that long or longer. Apparently he has had one patient on Iressa who lived for 5 years after starting treatment - although I don't suppose a case study of one should be that impressive.

Anyway - our big news is this all means we can go ahead with plan A in which Louis and Helen fly down to Victoria together on Monday the 6th December (next Monday!) for a holiday and a catchup with Victorian family and friends. I plan to stay up here initially (with the dogs) and have a break from caring - probably come down and join them for Louis' birthday on the 12th.

Any Victorian friends reading this who'd like to see her they plan to stay in Mont Albert in a rented flat and visitors and outings will be very welcome - Louis is the best point of contact for this time.

Any Darwin friends who'd like to say hello and goodbye before she heads off please drop in! We are home a lot and visitors are a delight.

Captain Umpherston and Oncology Review