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.