Thursday May 20 2010

Finally a written update and my apologies it has taken so long. First of all how is Helen? She continues to fluctuate mentally and physically - much as she was in Brisbane.
Sometimes her short term memory is amazingly absent, sometimes she is quite on the ball. Longer term memory things tend to be ok all the time. Her hearing has deteriorated over the last 6 months but we have finally had her hearing aids cleaned and adjusted which is a good thing. I have learnt a lot more about hearing aids in the last week - and about reasons for them to fail! Apparently weight loss and radiation contraction contribute to collapse of the ear canal and this means it is harder to get the little microphone to sit in space properly to transmit sound into air rather than abutting skin. Also the eustachian tube doesn't function so well after weight loss and changes to the pharynx so even sound that does get down the canal is not transmitted as well as before.
Over the last 2 days she has been more breathless than before and also tired. Her blood count is a bit down again which may be contributing but to my disappointment they did not give her a transfusion with the chemo. we'll have to see how she goes over the weekend. She also has a sore right arm which I hope is merely muscle strain and will resolve quickly. Otherwise sh is in pretty good spirits although it is sad for her and for us to leave her at Terrace Gardens when we have all been used to being together all the time.

Several of her Darwin friends have been traveling out to see her at Palmerston most days - particularly Kaye, Shirley and Marlene. Helen is enjoying these contacts and they are a great relief to Louis and me.

The place she is staying is a nursing home but the physical structure is a bit different/better than other nursing homes I have seen. It could be cleaner but it is the tropics! The carers are very friendly and do seem caring - I wish they wore name tags as Helen does really like to remember people's names and that's hard right now. The rooms are separated into small "pods" - little independent buildings with a nearby kitchen /dining/lounge area that only services a few people. Her room has an independent disabled access ensuite and windows and louvres on 3 sides and has its own airconditioner, fridge, TV and armchair for visitors. It opens out onto a little covered walkway. There are gardens around the paths, a resident grumpy dachshund, ducks and fish. To take her on a day outing we can drive the car around to the back entrance and then it is a short wheelchair trip from her room to the car and out into the world. Unfortunately Palmerston in a 20 minute drive from the part of Darwin where Helen normally lives and where many of her friends are based however it is only a short walk from Kaye's house which is great!
I think she is enjoying being here. It is certainly a better climate for her than Brisbane has to offer right now. There are still quite a few significant people we haven't touched base with yet so hopefully she will have the chance to catch up with more friends soon.
Today Louis is taking her to the Museum/Art Gallery for a walk/wheelchair cruise and then to Cornucopia for lunch followed by a visit to Kaye's house.

Yesterday we met the new Darwin oncologist - Dr K. He talked to us and Helen about going on with chemo. There was a great flash of the normal Helen when he was asking her whether she wanted to go on with it and she came back with "How can anyone make a proper decision about that? It's a medical decision. If you sound reassuring and tell me it's worthwhile I have to believe you and if you sound as if it's frightening then I have to believe that."
At this stage she has begun another "cycle" of her new chemo up here which went ok. A cycle goes for 3 weeks so at the end of that he suggests she have another CT scan to look at the tumor and for any further metastases and the pleural effusion and depending how that looks consider whether to go on with chemo or not. He was fairly clear with Louis and I that although he doesn't know how effective the chemo is being nor what aspects of her physical state are due to chemo side effects he would expect the cancer to become much more active and grow and spread when she does stop chemo. However at some stage he would suggest stopping it anyway when she becomes more frail/unwell or if there is evidence that the cancer is progressing anyway.

Tomorrow Louis will fly back to Brisbane for 2 weeks. My Aunt Sally arrives next Friday and in the interim it will be just me.

I had a meeting with the palliative care social worker today and she is helping start the process of accessing physical supports for Helen's home as well as being reassessed by ACAT for home nursing support. Hopefully we can get this in place soon and then it will be easier for her to visit home overnight even while she still has the respite bed in the nursing home.

If any Darwin friends are reading this and planning visits please phone me before you go in case I've taken her out somewhere so you don't have a wasted trip. If you are eating with her please do encourage her to eat - even at the level of spoon feeding - she has lost quite a bit of weight in the last few weeks and it is not helping anything. Readers from elsewhere thinking of writing - Louis will be checking mail in Brisbane so never fear - it will get here eventually. If you would like a darwin address to write to please contact me (I've realised that posting addresses on the internet is maybe not a good idea ;-))
If you are thinking of visiting...please do! Helen's house is big and beautiful and has lots of room for guests. Louis and I would love more people around who care about Helen

Helen at Terrace Gardens May 2010 and at home in Darwin

Helen in her room in the Gardenia Section at Terrace Gardens Nursing Home - Respite bed.
Helen trying on hats with her friend Lil at her home in the Gardens

Helen in Darwin May 2010

Thursday 13th May 2010

We're in Darwin!
So far so good. Helen and Louis and I flew to Darwin this morning and were met at the airport by her friends Bilha and Lil. We had a lovely sendoff in Brisbane last night with Peta, Sarah and Julie so life is feeling quite social. So far we have gone straight to her Darwin house in the Gardens and Helen is having a lie down in her studio.
Next we plan to go out to Terrace Gardens in Palmerston where we have a respite bed booked and hopefully get through admission without too much drama. we have brought all Helen P's beautiful cards with it to brighten up her room.

Helen's house is looking lovely - many thanks to Lil especially for all her care of it.

A good friend of ours will be clearing mail in Brisbane and can forward things up to us but an important point is that people who want to write directly should address mail to Louis rather than Helen or I as we both have redirections on our names from Helen's Darwin addresses.

when I find out the arrangements for writing/phoning at Terrace Gardens I will post them here.

Monday 10th May 2010

Carol and David have been visiting which is lovely. Here is a few thoughts from them (they hadn't seen Helen for a while) :

We arrived yesterday and have spent a pleasant night and day with Helen, which we are now completing by playing an enjoyable game of scrabble prior to training and busing off to Buderim.
This time last week we were enjoying Darwin.  Originally Helen was to celebrate her 70th at the beginning of Darwin's winter.  And what fun!  Markets and heat and friends of Helens.  Hello to Lil - thank you for all the things you and Yvonne did to make our time less stressful, and hello to Peter from Absolutely book shop.  All your warm wishes were given to Helen in Brisbane.  Cheers Carol & Dave x

Tuesday 4th May 2010

Well, Helen came out of hospital last Thursday. Both Louis and I have found it a bit shocking that she is so physically debilitated since she was admitted. I think I had imagined that as she was in a rehab war with daily access to physio that she would at least maintain her capacity to walk and stand if not improve a little. In fact she is much much worse. I think this is cognitive as well as physical as she has really lost a consistent sense of herself in space which makes balance almost impossible. She tends to lean back when she tries to walk which makes forward progression difficult and falling likely. Things continue to fluctuate even with this and sometimes she's not too bad. Despite the physical deterioration she has been pretty good mentally up until the last 2 days and able to converse sensibly and remember all sorts of things.
For Louis and me the big impact of her decreased physical capacity is she is not able to toilet independently and this is hard for all of us. I think we will definitely need more nursing help in the near future whether that is at home or in a facility. The question of where that is needs to be considered more. Doug has been visiting which has been fun for Helen (and us). He is great at feeding her and has taken her on a few outings. He really agrees that it is worthwhile trying to get her to Darwin soon if it is at all possible so Louis and I need to have a serious think about that. Darwin Wordstorm starts next week - one of Mum's favourite events in the year. It would be great if she was fit enough to go to the odd event.

Monday 3rd May 2010