70th Birthday Invitation

Tuesday 30th March 2010

Well - in preparation for the birthday Helen had 1500ml fluid drained off her R lung yesterday (they said there was quite a bit more there but it wasn't safe to have any more taken at one time). Then it turned out that her Haemoglobin was only 76 - usually she gets transfused when it is 95 or so and this is the lowest she has been - with no obvious reason for it. So - she had 2 units of blood today and will have some more tomorrow.
This morning she said "In case you are wondering if this is all worth it I had a lovely time breathing last night". So that was good to hear - I was a bit worried that the R lung had been collapsed so long it wouldn't be able to improve even with drainage of the fluid.
As I've mentioned before we are planning a gathering for her birthday. I have belatedly sent out a few physical invitations today - main limiting factor being whether I could find people's addresses and whether I thought they might not see the blog. For those I haven't managed to invite directly/personally - you ARE absolutely welcome and the lack of an actual invitation is down to me rather than Helen. Also for people who live far away who did get sent a physical invite - no expectation at all that you can come - just including you in the event!

Saturday 27th March 2010

A bit of hard week for Louis and me. Helen is more frail and breathless and has had a couple of small falls - no injuries thank goodness. Sometimes confused and has word finding difficulties but not consistently. She is in pretty good spirits and enjoys company - particularly people to sit with her in the evening to watch TV or DVDs. She re-read Leonie Norrington's "The Devil You Know" in a day and The Glass Castle over a few days. We tried watching the Vicar of Dibley - a gift DVD from Jac but no subtitles made it hard for her to follow and turned out to not really be her cup of tea.Tonight we watched Bed of Roses together on the ABC. Things aren't that bad or different really - I think the 2 of us are just getting a bit tired.
We got the results of the CT scan on Thursday - the GP said it was not such good news as it shows the primary tumor is bigger, the R pleural effusion has recollected and the R lung shows significant collapse but on the other hand it did not show any new metastases and the brain mets are still not visible. I was actually pretty happy to hear that as with the confusion and word finding issues I thought there might b more going on in her brain. f
We are working on the idea that maybe she is getting a bit low on oxygen so...with the hope of getting her in the best form possible for next Friday (her 70th birthday) we have made a plan that on Monday sh will have another pleural tap, on Wednesday she will have a transfusion and this coming week will skip chemo.

On Friday itself - visitors are welcome to drop in anytime. Louis and I are planning a sunset gathering on the rooftop here (13 Dorchester St) and all are invited - we'll see how her energies go but I know she'd love people to come - and so would we! I hoped to get some postal invitations out but looks like that will be quite late so if you read this and know others who might like to come please pass on the word.

Friday 19th March 2010

This week Helen had a facial on Tuesday and a cup of tea with her friend Peta. Some good phone conversations with Robin and Sally and Lil. She started 2 books - the first turned out to be of little interest - now trying the latest Helen Garner collection of non-fiction essays. Musing on why Helen Garner feels compelled to go to "hard places". We received some more beautiful painted cards from Helen P and a lovely card from Judith S with fragments of poetry on the theme of trees. Both brought much pleasure.
On Wednesday she had chemo and today is booked for the long awaited follow up CT scan which will assess progress. Mentally she fluctuates a bit - mood is still good and cognition and time sense vary. Physically still frail but relatively able. Louis and his friend Stephanie have gone away overnight and H and I are having a quiet time.r
Robin and Mary-Lou have sent word that they will visit for a few days at the beginning of April - Helen's 70th! Others are welcome too. We will have a gathering of some kind for the day.Mm's friend Bilha has also said she may visit from Darwin - Helen is excited about this but yet to call Bilha or make a plan.

Monday 15th March 2010

This morning we had a surprise visit from Barbara and Brian from England which was delightful. Sadly their Australian tour has struck rain wherever they've been but I think they are enjoying themselves nonetheless. Just back from Fraser then on to Hamilton Island.
Barbara's mother Frida is Helen's cousin and despite being elderly and frail she has also flown to Australia. She and Helen had a great time catching up in England last year and it would be lovely if they could see each other again. Frida is only going to Victoria so there's another reason to try to get helen fit to fly down there for a week or so. I don't know how realistic it is though - hard to say.
The other significant news on the Helen front is she finished reading "Guernsey Potato Peel Pies" a book recommended by Sally and Carol and bought by David. This is exciting as up until now Helen hasn't read anything since she got sick.
This morning she is also helping me proofread an article on chlamydia...so despite not remembering whether she has ever been showered in the bathroom that she always uses she is still functioning mentally with another part of her brain!

THursday 11th March 2010

I am having a day off today thanks to Louis and a respite visitor called Jill from Karuna Palliative Care. Helen continues to be pretty variable. In great form on Tuesday but woke up disoriented yesterday and had word finding difficulties and that was before chemo. She started another chemo cycle yesterday and had another unit of blood. After next week's treatment she is due for another round of MRIs etc to assess where the cancer is up to.
So far I spent my day off with Sarah and baby Aisling and am going to a comedy show with Kellie tonight.
We had ACAT assessment last week and it looks like Helen will be eligible for a package of increased supports and for residential care if she/we want that. Tomorrow I have booked for her to have a second facial treatment at the Lily Lounge.

Monday 8th March 2010

Oh darn this internet - today is so slow I'll have to defer posting photos for another time. So...it's been a week or so since I posted. An "off" chemo week which meant no trip to the Mater but nonetheless a very full round of allied health professionals and medical visits. We have seen a physio, an optometrist, the domiciliary nurses x 3, the palliative care nurses x 2, the ACAT nurse case manager, the home health aids delivery man x 2 and the GP (just once!). In social events we went on a drive out to a leafy green suburb of Brisbane and had a marvellous morning tea-lunch extravaganza with Peta B and her delightful family and we went out for breakfast once at the Avid Reader - a bookshop in West End. My friend Kellie came to stay for a night as she needed a little care too and the internet was down at her house so that made for more social meal experiences for us all and allowed Louis and I to occasionally leave the house at the same time!
Helen has had some really positive times in the last few days including waking up the other day saying that she had felt really inspired in the night and felt that she would be much more able in the day to come. She wanted to thank all of you for staying with her during the times she has been really flat. On Sunday she had the social energy and presence of mind to make a few phone calls which was lovely. Having said that she still gets tired very easily and will happily sleep most of the day if not encouraged to wake up and do things. Probably partly from her daytime sleeping but also in some part due to her mental state Helen's sense of time is distorted and she often thinks things have happened twice or have gone on for a really long time even when this is not the case.
Life easily gets a bit monotonous - despite the stimulating whirl of allied health contacts - and I would urge Brisbane folk to continue to consider visiting and/or to take her on outings. Fodder for the mind and soul.

Helen and Louis with Baby Aisling

3rd March 2010

Since I last posted we have had an action packed time. Notable excursions and events include: L and H and I going to see Bran Nue Dae at the Eldorado - sadly I was the only one who really liked it though and the arrival of the mobile chair and bed. Uncle David would love the chair I think - it is designed to tip you up until you are on your feet and half standing! The bed is less successful as the mobile part of it seems to have stopped working and it came fitted with a special air cell mattress which is designed to prevent pressure areas in people who are in bed a lot - it slowly varies the air pressure in alternate sections....Helen is still active enough not to really need this and she doesn't really like it "It feels like there are little lizards running underneath me" so I think we'll go back to something lower tech. H and I also went to have her eyes checked by the optometrist and have a new regime to manage their scratchy, watery-ness and while we were out had a rendezvous in a cafe with Mum's friend Peta B. On the same day she went and had the first facial of her life which must have been quite something as she said afterward "Did we only have one facial? It seems as if someone has been smoothing my face all day."
We also had a private physio come out and suggest some strength exercises to maintain strength and mobility and Helen has already done these this morning. Today I made a chart for Louis, me and/or other carers as the number of things that have to be done twice, 3 times or 4 times a day sometimes seems a bit much!
Last Sunday my friend Sarah visited us with her new baby Aisling. I will post some photos of Louis and Helen having a hold. Aisling is 3 weeks old and gorgeous! The other excitement on this day was Helen again ventured up to Louis' flat which for those who know Dorchester St is no mean feat.