Helen's Poem for Natasha's piece of theatre Frinj

The Body Monologues Helen Pavlin

1

Me? I was always the inactive type.

I’d be reading while others gardened,

I’d drive where others walked,

I’d stay home when others hiked and camped.

"Never stand if you can sit, never sit if you can lie down."

I appropriated this advice for my own.

And I didn’t worry about my health,

confident I came from good sturdy stock.

Imagine the invasion of my mental space when my grown up children,

visiting, told me they’d cased the place and chosen the best gym for me!

Me? Gym? Silky leotards, young people, loud music, pointless movement.

They persisted.

I agreed to a visit.

Weird how I decided to keep going even after they went home.

How I worked to move from the small yellow dumbbells (I never used the tiny pink ones)

to the next size up.

How I worked at balance on the big ball and took pride in holding myself plank-stiff

even though push-ups continued to defeat me.

Then: I could carry my groceries in a single trip up three flights of stairs.

Novel! Real life outside the gym.

2

After a while I discovered the heated pool aqua-aerobics class

– so much gentler on my joints.

You can see the pain leave the faces of those with arthritis

as they walk down the ramp.

“It’s your body: you decide.” says the instructor.

But she sets a cracking pace.

The water respects my troubled back.

I am surprised how many old songs I recognise.

In the change-room, showers, and benches to sit on,

we half-dry our varied bodies, and struggle to pull up our knickers.

I stay for coffee. Some-one jokes: “You didn’t recognise me in the shopping centre.”

“I know you better without your clothes on,” I reply.

One morning Lucy, a twice widowed Filipina in her seventies,

shows us a photo on the real estate page: the house of the man she intends to move in with after they have both sold their properties.

A devout Catholic, she giggles: “I don’t know when we will get married!”

“You’re too old to worry about that – just do it!” says my friend,

who is glad that she just did it,

not knowing that her time would be so short.

3

“You need back exercises. You need to develop your core strength.”

I listened sceptically to the physiotherapist.

"More squatting, less bending."

I resume the physio’s exercises whenever my back lets me know it has detected that there’s insufficient maintenance going on,

after the holidays I give myself,

thinking I am fit again.

4

The ancient Chinese practice of Chi Gung is not about strength, of course.

It’s about breathing with movement.

“Make it beautiful,” says the Master, correlating movement with breath.

We learn to push our bellies forward, making room within for extra air, extra oxygen.

Beauty comes from smoothness of movement,

and gentle regular breathing, preparing body and mind for meditation.

Easier said than done, of course,

but I do get better at letting stray thoughts float away again without putting up a fight.

5

I sign up for a yoga retreat.

One instructor I am familiar with.

I recall once bursting out laughing in his class.

The movement he calmly requested was, to my mind, preposterous.

But then I watched as others did it!

What it is to have lost one’s spring!

The other instructor was new to me.

She planned each movement to arise out of the previous one – a beautiful sequence.

Her svelte form flowed from one pose to another.

I missed the pauses given by the first teacher,

when my body could come to terms with what it had just achieved.

I came to see her asa relentless machine.

My mantra became: “I can do anything... as long as it’s not forever.”

Like a member of AA,

I would exhort myself to hang on just for this hour,

just for this exercise,

just for this position.

6

What about circus?

I’d seen some older women do things – strong things,

sharing their strength and balance.

Support for each one's different abilities.

I love to watch them but could I do it?

It seems I could. . .

Wed 28th October

Helen in pretty good form. The radiation burn is starting to come out however - affecting her forehead, face and ears. The ears are sore - like a nasty sunburn. I think those areas didn't get as much of the protective aqueous cream as others.She is more tired also as they warned but really doing pretty well. Able to enjoy phone calls and visits. Putting on some weight. Eating and sleeping well.

Having her first dose of chemotherapy today. Fridge well-stocked with ginger beer - apparently helpful!

Aiming toward discharge to Louis' downstairs flat at Dorchester St ~ Wed next week. Tomorrow morning Louis and I are both flying to Victoria to go to Nati Frinj. He plans to return to Brisbane on Monday. I will take a little longer. It is a good time for people to visit Mum as long as you are sensitive to her energy levels and check in with her to see how she's coping with it.

I probably won't write anything on the blog until I return to Brisbane so look for more posts after Monday - having said that I will post if I find out any important news by phone.

Monday 26th October

My birthday! Helen had a huge day and coped really well. First thing Louis picked her up from the hospital and brought her to Dorchester St. The 3 of us drank lemon and ginger tea together and chatted and opened prezzies...and completely lost track of time. Helen had just negotiated the 3 flights of substantial steps up to Louis' flat and was admiring his renovations when we discovered she had about 10 minutes until she was due back at the hospital to go through "orientation to chemotherapy". Supposedly she was joining us for a birthday breakfast but as our time had slipped away she had to eat a hastily scrambled egg and a banana on the way back to the ward. Louis accompanied her to the 2 hour talk on chemo while I had a birthday treat hanging out with my friend Sarah. Poor Louis didn't get breakfast at all as the talk was >2 hours.

We then left Helen to have a bit of a rest.

The good(ish) medical news of the day was that her CXR did not show much re-accumulation of the pleural effusion. The not so good news is that that means the breathlessness and the dullness at the base of her R lung are due to collapse. However, it might improve depending on her response to treatment - we'll have to wait and see.

In the evening Louis hosted a birthday party for me on the rooftop of Dorchester St - Helen made it up the stairs again and really wasn't breathless at all - no need for the oxygen we had handy. She was ensconced in a red armchair under cover with a small glass of Moet and lots of friends from my old Brisbane time came and shared food. It was to have been all on the roof under the stars but it seems I am something of a drought-breaker; instead we had a fabulous electrical storm and torrential rain, necessitating a retreat into the flat with only occasional excursions out to experience the downpour. Helen migrated to a green velvet armchair in the living room and stayed til ~9ish which was fantastic. Wendy and Louis both provided beautiful birthday cakes: orange-almond and historic-Pavlin-recipe-chocolate. There were sparklers (luckily the oxygen was safely downstairs) birthday singing and a great collection of people who love me. I had a ball and was so glad to celebrate with Helen and Louis.

Opening Helen Peake's present

Helen's Hair Shaving Ritual Webmovie

An attempt at compressed video from the hair shaving day - may not be watchable on the web but we'll see.

Helen opens a present

Helen's hospital room is starting to feel quite personal - full of beautiful flowers, cards, scarves and jewellery. Her friend Helen Peake is an amazing artist - formerly of Darwin but now Melbourne based; here Helen Pavlin unwraps a "stunning" scarf and card. Hopefully video to come pending technical issues.

Saturday 24th October

Helen had an energetic morning - she and Peta B went on a wheelchair excursion to a local cafe where she had a quarter strength decaf latte. Strangely she enjoyed this - sounds awfully weak to me - maybe it was the company! She had a good long talk to her sister Jennifer in New Zealand who is about to go travelling for 6 weeks - they hope to see each other when Jennifer returns.
We had planned on another out of hospital excursion - Louis had thought we would go to the Greek restaurant near the goanna in West End. However, when we arrived she seemed pretty exhausted and we agreed to give it a miss for today. When I checked in later on it turned out that as well as exhausted she had been quite breathless - so much so she couldn't settle for a nap. Luckily one of the food attendants offered to put on her oxygen nasal prongs and apparently this made her feel much better. Medication rationalisation is continuing - now off all antibiotics. Still on steroids, epilim, olanzapine, temazepam and amphotericin lozenges plus her every day old thyroxine.
Strength and energy are much better than before and she is still sleeping and eating. Although talkative definitely insightful and able to be interrupted.
We had a lovely few hours together sipping Jaegermeister and gossiping (with the oxygen on). Each of us had a go at recording "the Body Monologues" for next weekend's Nati Frinj - not too bad barring a few small slips. I'll upload a version soon - voice and text for others to enjoy. Those coming to the Frinj I think it's on at 4ish on Sat 31st in the ShadowLab at GAS.
On which note I am going home to Natimuk after Monday - to touch base and to go to Frinj. Louis isn't sure but at this stage is thinking of staying here. Hence it is a good week for people close to Helen to spend some time with her whether in person (preferred!) or on the phone. Having said that please be very mindful of her energy - both in terms of overstimulation and exhaustion and remember she needs to be encouraged/supported to eat even when spending time with people. Short walks and exercise are good but wheelchair trips are also an option and probably necessary for going out of hospital.

Friday 23rd October

A pretty good day. Louis and Helen went on an excursion outside the hospital! They went to a cafe and a bookshop and Helen bought some (more) cards and a book. A great sign of normal Helen-type behaviour. She had a 2 hour nap. Natasha visited in the afternoon and overlapped with the palliative care nurse - discussion options for support in Brisbane if she is here for any length of time.
At this stage the oncologist/psychiatrist want to keep Helen in hospital for the next 10 days, monitor her for side effects of the new medications (particularly recurring mania), continue to have dietician and physio input. She should start the chemo some time end of next week and be discharged ~4-5 days later. The next chemo would be given as an outpatient so we are looking at her coming back to flat 1 at Dorchester St for a week. Then can consider whether it is time to return to Darwin yet.
Some things Helen wants to do: fabric stuff with Lill S, beading with Kaye A, art with Helen P (if it were possible), edit/finalise "So Many Versions of a Life", host her 69 1/2 party in the wet season in Darwin! No doubt more to come...

Natasha's personal blog

I am enjoying writing this blog about Helen and it has worked really well in terms of updating people without so much time on the phone - thank you for reading and thank you for the emails and messages too.

I have decided to make myself a new twitter account under the id natasha_ahsatan. The idea: a place for me to post brief updates on how I'm going and what I'm up to - for friends who are thinking of me. The first exciting post is - I had a nap! I don't think it will get too much more earth-shattering than that, so I don't suggest following me unless you're really interested, but I think I'll find it therapeutic and a good way to stay in touch with friends.

a poem for Helen from her friend Hugh

For Helen Pavlin

I didn’t like you at first:

Your face vividly displayed

Your dismay, your disapproval

(Of me? I wondered.)

I would think that,

Wouldn’t I, since

That was exactly how

So many people react

To me, affronted

That I wear my heart

On my face?

Then I started

To see who you really were.

You had standards--

Old fashioned, picky ones,

They’d say today—

But what a relief

To find someone else

Who knew where the

Commas should go,

Who understood

That you couldn’t

Trail a participial clause

Like that!

You got your Minutes done

With speed and accuracy

(You didn’t leave them

For a year, or try

To get someone else

To do them for you.)

And when you spoke

You always had something

Worthwhile to say.

And then we found

You wrote poems too—

Poignant reminders

Of pain and marginal

Existences, stinging

Rebukes to the System

We’d all suffered under,

Words caringly arranged,

Sensitively chosen,

Forged in the fires

Of anger and empathy—

Not so different

From Social Work

Really.

And so you became

A friend at a distance,

A continuing presence

In our lives, your

Loyalty comforting

In our isolation

Your integrity bringing

Reinforcements to

Our war of attrition

Against pompous,

Petty tyrants.

And now, tears

Come unbidden

At the thought that

Your fiercely caring,

Fiercely intelligent

Life may end sooner

Than either of us

Expected.

Heroines of helping

Don’t get remembered

Like the heroes of Gallipoli

But, Helen,

When we gaze at the sunset

From our Western window,

Or see the sky brighten

Over Blackheath with the dawn,

We’ll remember you.

Hugh Crago, October 20 2009.

Wed 21st October

Last radiotherapy over!

No terrible side effects so far. Still discussion and thinking to go about palliative chemo - whether to do it? where to start it? Both Brisbane and Darwin are options.

Helen finished her oral antibiotics for pneumonia on Tuesday and had a temp of 38 deg on Wed morning so I guess maybe that collapsed lung is still infected. Disappointing - I was so pleased she wasn't suffering hot/cold anymore. Still she wasn't too uncomfortable with it - just wanted to rug up a bit more.

Exciting new news in terms of wellness - she has been able to read all of her 2 new Dorothy Porter books (previously couldn't really read as she was too weak) and can also watch short television shows! The little things...

Helen's letter to her brother Robin 3 hours after Natasha was born

Before coming up to visit Helen Robin says he was just moving some papers around in his office and this came to light! Apparently he hadn't seen it for years. I am amazed at Mum writing 3 hours after giving birth and that her handwriting and expression are so similar 38 years later.

Tuesday 20 October

A better day. N and L both spent some good time with H who was very much herself. Not manic at all. Sweet, funny, overly detailed and as always - very interested in people and their motivations and in words and their derivations - but just herself. 4th radiotherapy - came later than it was supposed to and she was exhausted afterwards but overall ok. No more chills afterward so far. No obvious side effects from the new medications. Finishing the antibiotics for the pneumonia - still afebrile - isn't modern medicine amazing when people remember to use it! Still on flagyl for her gut - hopefully finishing soon. Eating much better. Looking better in the face - has put back on a little weight. Now the challenge is to improve her strength a little.

Last radiotherapy Wed 21st then a week to recover a little before any further treatment.

Delighted by cards, emails, flowers. Thank you to all.

Not sure how long she will be in Brisbane. At this stage really having very limited visits and phone calls but starting to be more possible than before.

Mon 19th October - pm

Louis visited in the late afternoon - 3 hours after radiotherapy. Helen was not so good. Really really tired. A little confused. Kept thinking she was in Darwin rather than Brisbane. Frightened that she will be discharged after Wednesday because of something one of the nurses said. Doesn't feel well enough at all.

Louis reassured and soothed her. Settled her to watch TV and hopefully have an early night.

Presumably a radiotherapy side/effect or response? I don't really know. Looking forward to seeing her Tuesday morning after some sleep.

Only 2 more radiotx treatments to go.

This morning I am taking a selected print out of all the emails and facebook posts I have received from friends and family (both mine and hers) - she loves to hear them.

Monday 19th October - am

I had a long visit with Helen in the early morning after taking Doug to the airport and saw the psychiatrist Dr A and oncologist Dr C with her. Helen was in good form. Adjusting to her lack of hair. Slept well. Not at all manic. Eating reasonably well. Talked about all sorts of things.

Medicine wise - she is to stay on 10mg Olanzapine at night for now. Start a low dose of Epilim as a mood stabiliser and perhaps as a seizure preventer. Start 5mg Dexamethasone to minimise swelling from the radiotherapy in brain, oesophagus and bronchus. Risk of this is worsening /triggering mania - hence the decision to start the Epilim now. Also makes sense to me to do all this medicine starting, stabilising, testing while she can be monitored and hopefully they can avoid serious iatrogenic problems.

Dr C told us that the side effects of radiotherapy will actually be worse over the next few weeks - tiredness is likely to be worse. Possibility that it will be harder to swallow.

Important to eat as well as possible now. Also to try to do a little exercise and increase activity as apparently exercise is the only thing that really counters cancer related fatigue.

Sad to hear as right now I feel Mum is the best she's been since she got sick.

We still have to decide for sure about palliative chemo but are assuming we will probably try it at least. They will give her a week's break from finishing radiotx this Wed before having any chemo to allow her to recover a little - sounds like we need to keep supporting her to eat lots of yummy things.

Radiotherapy is scheduled for 1pm today - Robin will accompany her.

"Look good, Feel good" volunteer cam round to offer cosmetics and support - apparently the cosmetic companies have a "gift pack" for oncology patients.

Jed figures things out in Darwin

Douglas and Jed stayed on in Darwin when Louis and I flew to Brisbane with Helen. For those who haven't met him Jed is our 11 year old staffy (Mum's furry black grandchild). Jed is always fabulously chilled out in the tropics - a lot of lying on his back not doing much. After we left Doug told me Jed was getting out into the garden and he couldn't figure out how it was happening - and then - it was captured on video....

What a clever dog!

Doug and Jed flew back to Nati yesterday with a one day stopover in Brisbane. It was great to see them here and for Doug to come to the hair shaving ritual. He has recently cut his hair short (first time in 10 years) and Helen is almost as delighted with it as I am!

They are staying in Nati at least until the Frinj and Doug tells me it is a particularly beautiful time to be there - flowers everywhere and healthy crops for the first time in 8 years or so.

The weekend

Helen had two days off from radiotherapy. She was pretty well. Less and less manic and more herself. Still very tired and weak and needing a lot of rest and some time to herself. Robin (her older brother from Victoria) and Norm and Sue (old friends from Sydney) were in Brisbane briefly so Louis and I took the chance to have a bit of time out.

Strangely difficult to relax even when we tried but here's a list of "fun" stuff we did: tried to have more naps; Robin took us out to a Japanese restaurant run by actual Japanese people (rare for Brisbane) who mostly had incredibly minimal and cute English;

we tried to eat better food in general; visited Sarah and Brian and their chickens; gave ourselves some retail therapy in Myers - clothes shopping and an ipod touch for Mum - mainly for listening to podcasts of poetica and the book show and other radio national goodies (Doug continues to be horrified by Louis' and my insistence that Helen embrace new technologies - but she does really well!) went climbing at Kangaroo Point with Douglas, Jed and Gareth; went to dinner at Muooz - Eritrean community/refugee restaurant in Moorooka with Norm, Sue, Robin, Louis, Doug and me - delicious tangy sourdough pancakes and spicy food.

Helen had as many visits as she could manage and some quality time with each of us. Eating better and has put on a little weight again I think - her face looks better.

Really no radiotherapy side effects over the weekend - obediently applying aqueous cream to face, head and chest 3 times a day. Started feeling able to watch TV again and watched all of 39 steps on Sunday night - stayed awake til 11.30 - a first since starting on the sedation.

Sunday afternoon we shared a hair shaving ritual. Natasha's friends Stuart and Michael joined us. We all rendezvoused in Helen's room at 3.30pm. The radiotherapy nurse warned us that Helen's hair will fall out ~ a week after the brain treatment finishes so it seemed like a good idea to pre-empt this.

Sarah lent us her clippers, poncho and fancy hair dresser scissors - veterans of many an interesting haircut.

We gathered on Mum's verandah in the fresh air, played the grimstones soundtrack (Mum recently saw Asphyxia's show and loved it), smudged the air and ourselves with white sage, wrapped her in the poncho and ceremonially snipped her locks into a beautiful bamboo bowl. Helen then snipped or received a lock from each of us to contribute to the collection (I carefully held my longest dread out of the way of her sneaky scissors). Louis provided Grandma's beautiful old sewing basket to keep the collection.

We progressed to serious no blade clippering and Louis and I massaged aqueous cream into her new scalp. I was strangely delighted and surprised to discover that Mum's skull is a very similar shape to mine! I've always thought I look very lovely with a shaved head and ...so does she.

The ritual concluded with Verve Cliquot all round in beautiful glass champagne flutes courtesy of Stuart and Michael - Helen has always valued real champagne (although prepared to drink quality bubbly/or sparkling instead) and she really likes a fine glass to drink out of. We stashed a small bottle of Moet in her fridge for later - maybe the end of radiotherapy - maybe another celebratory occasion.

We then allowed Helen to go and shower off the itchy bits that had missed the poncho and got down her neck - as some always do - and took out leave to let her have some time for rest.

I'll post photos/video as I get them from Doug, Michael and Sue but unfortunately I didn't take any myself as we went. Here is the aftershot from Monday morning where she gets a little sun to even up her skintones at Robin's advice:

Fri 16th October

Second day of radiation over. No skin burning so far, feeling tired and weak as predicted. Both days has had awful chills and shivers an hour or so after the treatment and today also had retching (but no vomiting) - fortunately brief. Natasha and Helen had a lovely day together in between the treatment though. N had finally read "So Many Versions of a Life" and (much to Helen's surprise) thought it was wonderful. Hopefully we can work towards publishing and a book launch.

Lani (4) sent Helen a piture of Gerty Gumboots from Natimuk. As some of you may know Helen is very fond of goats. Gerty Gumboots is a baby goat who has recently come to live with Natasha's neighbours Jillian, Paul and Isabelle. Jillian and Isabelle have been sending Helen updates on Gerty's adventures in life which have been very entertaining to read.

radiotherapy update

As it turns out Mum and I were wrong in what we understood about the radiotherapy - they treat the brain and lung at the same time which means she will have a total of 5. She survived the first one very well. Today they have decreased her sedation a little which is a mixed blessing but she certainly looks brighter. This evening her older brother Robin will arrive for a few days.

Thur 15 Oct

Morning visit with the medical oncologist: Dr C. Not actually the person we had planned the admission around (Dr M) but very patient and good to talk to. Spent an hour with us. Helen, Louis and I could all ask questions. Recommends palliative chemo - at least a trial. Says the focus is very much on quality of life. Would start after radiotherapy finishes i.e. in ~14 days. Treatment cycle is Day 1, Day 8 then a week off. Given through a peripheral line. Easy to do as an outpatient, could be continued in Darwin after initial monitoring. Main side effects are nausea, vomiting, immune suppression. Would not actually cause hair loss but the radiotherapy will so H feels that is irrelevant. Helen talked more about her multitudinous options - Darwin, Brisbane, Melbourne, Natimuk. Still wants to be in Darwin when she can - "I have things I like to do there, a beautiful home and some good friends". Doug and I are up for moving there if that's what happens and Louis too although he might have to come and go.

Helen much better today. I had a lovely visit with her - and got permission to share this blog! Louis then came back and accompanied her to the first brain radiotherapy - one down and 4 to go. Sounds pretty scary. They put the green net "death mask" over her head and then bold it to the table so she can't move. Really not good if you tend to claustrophobia.

What's happened so far

June-July 09

Helen, Natasha and Louis travelled together in Europe. A wonderful time inspired by Louis' invitation to Helen and Natasha to come and participate in a yoga/art retreat he was running in Tuscany with his friend Renae. We started out together in England and Natasha and Helen visited Lindsay in Hawridge courtesy of Stuart and Michael and stayed in the beautiful Flint Cottage. N and H then met Louis and hired a narrowboat to travel on the River Wey for a week.

We had many adventures owing to minimal competence with boating (thank goodness for Louis!) and a wonderful experience catching up with Freda, Barbara and Brian in Weybridge (Helen's UK family). Also a fabulous day excursion by foot from the boat to Wisley Gardens

which Helen photographed extensively for Sally and Margaret.

Next H, N and L travelled by plane to Croatia,

where we explored Paklenica and Jezera Plitvica.

Helen began to notice an itchy rash affecting her neck, back and arms, had a bit of a dry cough and thought her exercise tolerance was not what it used to be - first really obvious in Croatia.

We hired a car and drove Slovenia to see Marjane and Spela (Frank's niece and her daughter)

Rudi and Majda (Frank's cousin and cousin -in-law) and explore Ljublana

again as well as a bit of the beautiful Slovenian countryside.

From here H travelled on to visit Hans and Martina in Stonsdorf (long term Austrian friends)

then Martina and Helen rendezvoused with Natasha and Louis at Villa Ebbio near Monteriggioni and Siena in Tuscany. We had a wonderful week. 6am rising for a walk, 1 1/2 hours of yoga, breakfast, then either an excursion into the Italian countryside,

life drawing class, meditation or free time, more good food, more yoga, more food and bed! Helen also participated in a NIA dance workshop and a circus workshop - very adventurous!

She discovered a wonderful capacity to draw - beautiful elongated necks and tiny heads. It was peaceful to follow the week's routine and inspiring to experience Louis in his professional element.

From Ebbio H travelled to Florence with Linda (a friend from the workshop and a Brisbane student of Louis'). They had a wonderful few days exploring and shopping and Helen posted all manner of extravagances back to loved ones in Australia. Next Helen went on to stay with the Gramer's in Klagenfurt (Herbert, Barbara, Armin and Beate)

- long term Austrian friends/family. I probably have the sequence of events wrong but I know they were all involved in trying to provide the computer expertise Helen needed to submit her application for the Longlines Fellowship at Varuna (So Many Versions of a Life). This sounds to have been an epic effort involving the whole family (and finally Douglas in Australia). Helen also enjoyed catching up with the extended family including Irme. She also delighted in time in Vienna with Armin and enjoyed several of his performances (more than once!)

At some point H had more time in Stronsdorf

with Lizi and Franz and Hans and then travelled back to England where she was able to stay with Anna L's mum and grandma (Maria and Kathy), to spend some more time with Freda and to visit Lindsay again at Flint Cottage for a writing retreat.

Late July, August and September

Helen returned to Darwin and remained pretty knocked around following the flight and the jetlag - felt weak and tired and found her day to day stuff fairly hard to do. Having said that she kept working, went to an amazing range and number of Darwin Festival events and organised her house to an almost frightening degree! Helen was invited to be a "Truth Teller" at the Darwin Festival - an event in the old Commonwealth Bank that involved people "depositing" their truths and secrets with writers and poets and "withdrawing" a creative response. This event was run by Annie W - a friend of Natasha's who stayed with Helen while she worked on the Festival and she and Helen had a few nice times together - some involving gin and tonic on the couch.

Helen wrote a marvelous epic poem (The Body Monologues) on the themes ow women, physicality and aging, for Natasha's planned performance event at the Natimuk Frinj - bath*house - and offered to perform as a "handmaiden".

By mid August the rash had become very, very itchy and Helen had to spend what felt like several hours a day applying emollients and steroids - but after a few weeks this started to improve the appearance of the rash and the itch also settled. A skin biopsy showed nothing specific.

In mid September Helen had a routine colonoscopy following up on some previous health issues. She found the prep hard to tolerate and in the week following was pretty much knocked-for-six - felt hot and cold, weak, couldn't eat. The next weekend she and Natasha agreed she should come down to Brisbane for some TLC with Louis. On the Monday her lovely friend Kaye took her to see her GP Anita who discovered she had a temperature of 39. Anita said " I think you have pneumonia- you have to go to hospital right now" and Helen was admitted to Royal Darwin Hospital that night.

Mon 21st September: admitted to Royal Darwin

[Apologies to most of my readers but I'm going to write some of the next bits in medical-ese.]

As it turned out Helen had a 7cm R pleural effusion, was hypoxic and breathless and continued spiking high temperatures. She also had significant oral thrush suggesting immune suppression. Low sodium. High CRP. Low Hb. Started on 1 litre fluid restriction to manage sodium levels.

Tues 22 Sept

400 ml of pleural effusion drained and sent for microscopy, cytology and culture - admitted to RAPU - Helen felt very relieved to be there. A high level of care and attention. Given oxygen - felt a lot better. It didn't hurt at all to have the effusion drained. Oxygen levels , breathlessness and comfort improved greatly afterwards.

Wed 23 Sept

Moved to ward 4a. CXR. CT brain/chest/abdo/pelvis. MRI Brain. MRI 30 min - v noisy. Helen very distressed by evening. Felt "no one had come near her all day". Really different level of nursing care and attention to RAPU. Told there were "spots on the MRI" but wasn't clear what they were. Thought she was told the MRI was being sent to Perth. Ward 4a turned out to have primarily demented and high care patients awaiting placement - a lot of moaning and calling out and restlessness. Royal Darwin Hospital generally freezing cold. Helen very uncomfortable with this. Nursing staff called Natasha in Victoria and agreed to organise a Temazepam for the night.

Thurs 24 Sept

Louis and Natasha flew to Darwin. Helen moved to ward 3b - oncology.

More comfortable but 4 bed ward and still very cold. Noisy. Poor sleep (mainly due to cold). No Temazepam offered or allowed this night.

Fri 25 Sept

Natasha and Louis spent the day with Helen. Brought lots of warm clothes. Helen much more comfortable although still cold. Getting to know the people in the ward. No privacy for any of them as the doctors and nurses all talk loudly about everyone's problems despite closing the curtains. A lovely older deaf Anglo woman who'd had a heart attack and was declining any active management on the left, a kind friendly Aboriginal woman (not so old) who'd had a stroke, in the bed opposite. Shared her story with Louis - 16 grandchildren, 26 great-grandchildren. Grew up in the Kimberley. Stolen Generation. Stories of walking in chains. Gave Helen a Christian pamphlet with the most loving intentions.

On the diagonal a very quiet shy girl from Gove - Aboriginal, quite young. Having chemo. Sister camping in a trundle-bed by her side. Had kids. Her face lit up and her body language and voice expanded when she got a family video call.

Sat 26 Sept

L and N spent the day at the hospital. Kaye visited too. Dr G (Helen's admitting physician - main speciality cardiology) bumped into us all in the cafeteria. Spoke to Louis and Natasha alone. Confirmed he thought the diagnosis was likely to be an inoperable lung cancer with palliative treatment the only option. Said he believed in waiting for patients to ask questions before giving such bad news. Said he thought Helen didn't want to know yet. L and N shell-shocked.

Sun 27th Sept

Ongoing fevers and sweats. Icy temperature of RDH very uncomfortable. Poor sleep continued - cold, noise, sweats. Had the memorable experience of soaking the sheets with a fever-sweat and being told no she couldn't have a shower but someone would come back to help. No one came. H managed to negotiate the ward alone and find sheets and gowns to change into . Re-made her own bed with "hospital corners" in the middle of the night. (despite supposedly being only allowed to walk with a wheely walker due to her falls risk). Elevated/hyperstimulated state had started - poor sleep, writing/talking all the time.

Had a bit of time at home with Natasha and Louis.

Mon 28th Sept

Ongoing weakness, fever, sweats.

Bronchoscopy. Surprisingly pleasant/tolerable experience. H seemed much more rested afterwards - a couple of hours of sedation/anaesthesia seemed like it was a good thing.

Tues 29th Sept

Douglas and Jed arrived. No medical results yet. Told it can take more than a week to get cytology back. Fluid and bronchoscopy biopsies both sent to Perth as Darwin has no cytology service. Louis and Natasha saw Mum's GP Anita for the first time - a relief to feel like someone who knows Helen and cares, is involved , has a plan and is trying to co-ordinate things.

Med Reg Miriam and Natasha both flag with Helen that the medical team are looking for lung cancer.

Wed 30th Sept

Louis and Helen are together when the pleural fluid results come back - results given by the registrar (Miriam) - poorly differentiated adenocarcinoma. Non small-cell. Not smoking related. Common in older women. Fast growing. Likely metastases in brain - 2 cerebellar, 1 temporal, 1 frontal. largest <8mm.

Sarah E and Peta B arrive this evening. Temazepam prescribed as a regular sleep aid by Miriam - a great relief to Helen. Fevers continuing. No regular antibiotics. Oral treatment of mouth thrush not working. Muscle weakness continuing/worsening.

Thurs 1 Oct

Met Oncologist - Dr MG. Spoke to N and H together. Said: important treatment options - radio tx soon - to stop brain lesions growing and seeding new lesions (not available in Darwin). Chemo an option. May improve prognosis by 4-6 months. If pleural fluid re-accummulates could try pleurodesis. May be possible to surgically open the blocked part of the lung. Agreed to facilitate transfer to private hospital - quieter room, possibly better nursing. Able to stay under Dr G who headed the team who admitted her. Italian. Cardiologist by specialty so not really appropriate but does have private admitting rights which seems rare in Darwin and H likes him.

Ongoing weakness, fevers, mood elevation, irritability, intolerant of odours, no appetite, oral thrush, itchy rash recurring.

Fri 2 Oct

Moved to Darwin Private Hospital under Dr G. Peta and Louis did all the hard work. Private room. Much quieter. Very overstimulating day. By the end of the day- increasingly elevated and distressed. No Temazepam prescribed - N and P gave it "on the quiet" - 2 tabs, still almost no sleep. Writing all night.

N saw Anita today - discussed referral to psychiatrist and surgeon and palliative care.

Sat 3 Oct

Peta B went home.

N and Dr G spoke to H together. Still elevated. He felt this was a reaction to bad news. N felt more serious - tending toward mania/psychosis. Still regularly febrile. He had not realised/thought the readings were erroneous. No antibiotics prescribed thus far apart from a single dose of ceftriaxone on admission. More blood cultures taken this evening and IV timentin started. Night time olanzapine started (5mg) with much trepidation by Dr G who is not familiar/comfortable with this as a treatment option. H sounds pretty clear she would prefer to stay/die in Darwin.

Sun 4 Oct

Same same.

Sarah E went home.

Mon 5 Oct

An even more overstimulating day. Reviewed by: physician, oncologist, surgeon, psychiatrist, palliative care team, dietician, physiotherapist. CT Brain (noncontrast) repeated. Had a panic attack while having the CT scan partly due to being very cold. Technicians were brusque and hurried with her - quite frightening and awful but to food for lots of ideas for poems, plays and film scripts. By the end of the day quite manic, fractious and distressed. Poor sleep despite olanzapine.

Tues 6 Oct

More manic. Olanzapine increased to 10mg nocte. IV antibiotics continued.

Surgical review suggested technically possible to stent but not worth trying right now.

Wed 7 Oct

Reviewed by psychiatrist, physician, oncologist, physiotherapist, palliative care.

Olanzapine increased to 10mg bd

Thur 8 Oct

Oversedated but still manic. Awful to see. Scary for her and us.

Still having fevers. Not eating. Finding odours intolerable.

Fri 9 Oct

Reviewed by psychiatrist. Changed Olanzapine to 20mg nocte with the conscious intention to over-sedate but hopefully allow better functioning and alertness in the day time. Recognised really necessary for H to sleep , eat and rest (physically and mentally). Not possible while she is manic.

Sat 10 Oct

H came home for ~ 8 hours - afternoon to midday. Rested in her bed upstairs. Had a wonderful time telling and listening to anecdotes with David, Sally, Douglas, Natasha and Louis.

H not too bad energy-wise. Managed to rest and be quiet at times.

Sun 11 Oct

A bit of a crash from yesterday. Not really up to coming home today. Both overstimulated and exhausted sounding. David and Sally went in and spent some time with her in hospital.

Sally and David headed for home (Victoria). No high fevers recorded for 2 days - antibiotics changed to oral.

Mon 12 Oct

Transfer to Brisbane for radiotherapy planned. Louis flew on the 6am flight (dropped off by Doug). N and D spent from 7.30 t0 12.30 organising things to do with the transfer. Collected H and managed to get her and N onto the plane with 15 minutes to spare. On discharge discovered that when Dr G had stopped one oral treatment for thrush planning to institute another there had been an(other) error and she never got any - 1 week with no anti-thrush treatment. Given amphotericin lozenges bd on discharge (unlikely to work in my opinion). D and J stayed in Darwin to deal with ongoing stuff-of-life. L met H and N in Brisbane. Drove to Mater Private. Told there was no bed despite this being a hospital-to-hospital transfer. Apparently expected on Sunday - when she didn't arrive they gave her bed away. Initially offered a bed in a 4 bed ward, - not appropriate. Then a 2 bed ward, then a private room in Orthopaedics. Two hours later had a bed in a private room in the Coronary Care Unit as a temporary arrangement. Just unpacked and settled when the bed manager arrived to say that actually they did have a booking for her after-all that they hadn't been able to find and that it was for a Rehab ward on another campus of the hospital and would we like to move now? We said no.

10pm Helen met her admitting doctor - radiation oncologist - also Dr G. Said minimal info had arrived from Darwin - no CTs, no MRIs. Thinking maybe 3 weeks of treatment (rather than 2 days as suggested in Darwin) but needs more info.

Tues 13 Oct

Planned to move her to the Rehab ward - moved all her belongings there. Then Dr KG decided he needs to keep her in main building for more tests. Moved her to a private room in the Orthopaedic ward afterall - bed 820. Brought her belongings back.

Wed 14 Oct

Remains on fluid restriction - a bit miserable about this but coping. Slight increase in the Mater to 1.5L a day. Mentally much improved. Slept well. Still weak. Says still having sweats. Dry cough. Now having amphotericin lozenges four times a day. Food better. Appetite better. No longer disgusted by smells.

PET scan.

Radiotherapy planning session - talking about 5 treatments to the brain. Helen had a "death mask" - her words - made in green net for her head to help her to stay in the same spot whilst being treated and her first ever tattoo on her chest - just a dot! Possibly 5 treatments to the chest but need to wait to find out what PET scan showed in terms of other metastases. No psych review so far.

Still on 20mg night-time olanzapine. Quite a few side effects - probably too strong but much better in terms of mood and mental state.

7pm Dr C - medical oncologist -came - will return tomorrow when Louis and Natasha can be there too to discuss options.

Louis with flowers from Margaret for Helen.