Wednesday 28th April 2010

Louis and I are back in Brisbane. I gather from Dr C that Helen's mental state has continued to fluctuate while we've been away but she was in good form last night and this morning. She has chemo today - finished by 4ish this afternoon. Tomorrow we plan to bring her back to Dorchester St in the early afternoon. I had another chat with her this morning about what/where she wants to be both if she is too frail for us to nurse at Dorchester St in the time to come and if we need another period of respite and she has to go into a nursing home type facility temporarily.
It remains a tricky thing to think about and is complicated by the question of her fitness to fly.
She did say today that the thought that she would never get back up to Darwin to see friends and visit her house was "horrible" but when I pushed her a little on other things that are important to her she also wants to be able to see family from Victoria and of course Louis and me. I think the situation at Dorchester St is still ideal for us all - although we will have to see how she goes on discharge but I guess if she is in a nursing home type place where is the best place for this to be?
Maybe if she is well enough for the flight up and subsequently back we can try for an admission to a Darwin Nursing Home for the next planned respite and still return to Dorchester St. I don't know.
At least I feel relatively refreshed and able to contemplate these complexities which were seeming impossible and overwhelming before I went away.

Wednesday 21st April 2010

Helen is doing quite well - still in hospital on Floor 5 of the Potter Centre (Mater Rehab) and likely to remain there until next thursday. This is not because she is in terrible shape but rather as Louis and I are going away for a few days and she is well cared for and settled in there. She still fluctuates a lot in her mental state but has had some really good times recently. The only downside of it is she is withit enough to get bored! She had a wonderful time while her friend Bilha was visiting and was re-inspired with the desire to have contact with people from her Darwin life again. Hopefully this will still be possible. She has had some lovely Brisbane visitors too in the last few days and has asked me to help her invite a few people (who don't know each other so well) to visit for a morning coffee! This social planning and interest is new and very welcome.
Physically she is more frail than before but can still go for outings in the wheelchair. The Physios tell me she has had a daily walk with them with the wheely walker but these are probably only up to a maximum of 20m and with a rest before returning.
I will be in Victoria from tomorrow until Tuesday and I think Louis will leave Brisbane on Friday so anyone with interest and time to visit will be doubly welcome.

Saturday 17th April

Louis says Helen seemed really good today! Yay! Her friend Bilha arrived from Darwin tonight for a few days - hopefully that will go well for them.

Friday 16th April 2010

Louis tells me Helen has been moved to the Rehab Centre again - Potter Centre 5th Floor. That means she can have flowers again! Plus it is a quieter ward and much more comfortable and spacious so that's a good thing.
Louis will be back in Brisbane tonight - he's had 2 days away and I will be back some time on Monday.

Thursday 15th April 2010

I am still working down in rural NSW so only have limited snippets to report. Louis has just gone away for a few days too but initially was visiting Helen several times a day. He reports her mental state has varied quite a bit while she is in hospital - sometimes very with it and sometimes confused. Yesterday she had another 1.5L drained from her R lung and had some pain after it. Hopefully it will allow some lung expansion and better oxygenation though. The nurses from the hospital rang this morning to tell me she had had a fall due to trying to get up on her own but apparently is uninjured although they were planning an xray or scan of some kind to check this out more.
Today the Karuna Volunteer, Jill, who visits her at home on Thursdays, planned to go in and sit with her for a few hours.
Sorry I haven't got more news - visitors are very welcome - ask her if you can sign her visitors book as she doesn't always remember things and that way she and we can see who's been.

Sunday 11th April 2010

I am posting this from Collarenebri where I am doing another locum. At the moment Helen is still in Bed 898 on the oncology ward 8 South of the Mater Private. She has a phone: (07) 3163 1111. Louis is still in Brisbane at the moment but may go away for a few days. i thik the plan is to have another go at draining more fluid from around her R lung and hopefully get some physio input to maximise her function and physical ability. They have changed her chemo regime too so that is something else that they keep an eye on better in hospital than at home.

Planned Hospital Admission Fri 9th April 2010

Helen will be admitted to Ward 8 South at Mater Private again tomorrow. That's the oncology wards so she can't have flowers unfortunately.

Wednesday 7th April 2010

Apologies to all for the delay in writing about Mum's birthday - I seem to have had an internet curse hanging over my head. The summary is - it was great!
Helen was in the best physical and mental shape she's been for ages and was able to really enjoy the day. We started out with our traditional family birthday breakfast of deluxe fruit salad, a few gifties and a nice morning with me, Louis, Douglas and Helen's friend Peta. Helen and Peta watched a movie about Beatrix Potter that arrived from Sally and then Helen had a lovely rest. Louis and Doug and I set up the rooftop with the help of my friend Amber and then the part began...
We had 30 or so varied folk come along and a great evening of celebration. Helen was in great form and able to really enjoy seeing everyone.
Over the weekend she enjoyed a few days with Robin and Mary Lou and we went out to see the Stephen Jones Hat exhibition at the Art Gallery - highly recommended to anyone in Brisbane.
We received lots of beautiful messages from overseas and interstate.
For those who were sad not to be able to come to the party I really do apologise for the short notice - it was the best we could do.

Over the last few days Helen has not been so good - very frail and fragile, lots of word finding issues and sleepy. Louis thinks maybe she's just tired from the big weekend - I don't know.
Irrespective of that we were looking for a way to get respite care for Helen as I am booked to go on another 10 day locum from Friday and both Louis and I have been feeling a bit at the end of our tethers in any case.
Today I saw Mum's oncologist Dr C and she agreed to admit her from Friday so that is a relief. Both Louis and I think that will be the safest option for her and us and it will give Dr C a chance to change the chemo regime, drain more fluid off the lung and generally manage things a bit better.
We don't know the ward as yet but I'll post it when we do. Louis will take the chance to go away as well and have a real break so anyone who wants to visit will be especially welcome as she may feel a bit abandoned without us.

70th Party Photos 2

70th Party Photos 1